The “unhelpful invocation” of the term “sunburn,” she argues, makes “an unconscious mind feel vulnerable and fearful of the sun.” She welcomes this color, insinuating that you should too.

Decades of research have shown that sunburns are strong predictors of melanoma. Roughly 8,000 Americans are expected to die this year from the most serious type of skin cancer, melanoma, according to the American Cancer Society. Skin cancer is the most common form of cancer in the United States, and melanoma rates doubled between 1982 and 2011.

Still, Sell is not alone in the anti-sunscreen camp. Even Stanford University neuroscientist Andrew Huberman, host of the wildly successful podcast “Huberman Lab,” claims that some sunscreens have molecules that can be found in neurons 10 years after application. No evidence is offered. Elsewhere, he has said he’s “as scared of sunscreen as I am of melanoma.” Huberman’s podcasts are frequently ranked among the most popular in the U.S.; he has millions of followers on YouTube and Instagram and has been the subject of admiring magazine profiles.

Spreading misinformation and even conspiracy theories has become commonplace in wellness spaces across social media. In a politically charged atmosphere addicted to brokering in binaries, good science is too often sacrificed at the altar of partisan opinion.

Pushing back against medical advancements from as far back as the 19th century has become a rallying cry for a growing number of today’s conspiritualist contrarians. Fear mongering about vaccinations is not the only entry point to this strange world of conspiracy and misinformation, in which predominantly white, middle- or upper-middle-class wellness influencers propagate and sell ideas and products with little to no oversight. In this world, humans are godlike creatures immune to viruses and cancers, while those who fall victim to illness and therefore the twisted machinations of society are but collateral damage.

In May 2020, I launched the “Conspirituality” podcast with Matthew Remski and Julian Walker. Veteran yoga instructors deeply embedded in the wellness industry, we’ve long been skeptical about many health claims proffered by wellness influencers and the cult-like behaviors that appear in so-called spiritual communities. And we’ve always been attuned to the monetization of health misinformation. 

Conspirituality is a portmanteau of “conspiracy” and “spirituality,” coined in 2011 by Charlotte Ward and David Voas in an academic paper. They observed a strange synthesis between “the female-dominated New Age (with its positive focus on self) and the male-dominated realm of conspiracy theory (with its negative focus on global politics).” The pandemic provided fertile ground for conspirituality, moving it from the fringe to the mainstream.

Specifically, we launched the podcast after the release of the 2020 pseudo-documentary “Plandemic.” Filmmaker Mikki Willis, who had moderate success in the Los Angeles wellness and yoga scene a decade or so ago, found a much larger audience with right-leaning conspiracy theorists — so much so that he was joined by Alex Jones at the red carpet premiere in June this year of the third installment of the “Plandemic” series. Many other former liberals in the wellness space have taken a hard right turn, including comedian and aspiring yogi Russell Brand. Brand now regularly hosts conspiracy theorists in part of what these days appears to be a gambit to deflect against numerous sexual abuse allegations against him made public earlier this month. 

Not all conspiritualists are hard right, though their rhetoric predominantly leans that way. One of America’s most infamous anti-vaxxers, Robert F. Kennedy Jr., for instance, is attempting to combat President Joe Biden in the Democratic Party presidential primaries from the left. Predictably, Kennedy’s health policy roundtable, held on June 27, featured other leading health misinformation spreaders. 

While the anti-vaccination movement began the moment Edward Jenner codified vaccine science, the modern upswell of anti-vax fervor dates back to disbarred physician Andrew Wakefield’s falsified research that purported to link vaccinations to autism in 1998. Hysteria around COVID-19 vaccines began months before a single one hit the market, in large part thanks to misinformation spread by “Plandemic.” And that trend shows no sign of slowing.

Health misinformation is likely as old as consciousness. The learning curve in understanding which plants heal and which kill took millennia without the benefit of controlled environments. While no science is perfect, to deny or disavow the progress we’ve made is absurd. The 19th century was an especially fruitful time, with vaccinations, antibiotics, germ theory and handwashing greatly advancing our biological knowledge.

Germ theory is a foundational tenet of modern science. For centuries, miasma theory was the favored explanation for the Black Plague, cholera and even chlamydia. These diseases were supposedly the result of “bad air,” which the ancient Greek physician Hippocrates claimed originated from rotting organic material and standing water. 

In 1857, English physician John Snow submitted a paper tracing a cholera outbreak to contaminated water from a pump in London’s Broad Street. Adoption of sanitary measures was slow and grudging. Civic authorities weren’t interested in the expense of rerouting pipelines.

A few years later, French chemist Louis Pasteur discovered a pathology of puerperal fever, though it wasn’t until Robert Koch photographed the anthrax bacterium in 1877 that disease was undeniably linked to bacteria. Medicine was changed.

Contemporary contrarian wellness influencers also trace their antecedents back to the 19th century. While Pasteur won fame — pasteurization remains an important practice for killing microbes — some of his colleagues resisted his findings. French scientist Antoine Béchamp devised the pleomorphic theory of disease: It’s not that bacteria or viruses cause diseases; it’s just that they’re attracted to people already susceptible to those diseases. 

As Pasteur and Koch continued their research on microorganisms, Béchamp faded into obscurity. But his “terrain theory” lingered. It was the harbinger of the infamous “law of attraction,” the belief in the power of manifestation, of effectively imagining wealth, health and success into being. It’s the school of thought that, repackaged, made books like Rhonda Byrne’s “The Secret” (2006) a global bestseller. 

Extended to physical wellbeing, it means that if your mindset is “correct,” disease has no pathway into your body. This ideology is behind the many products and courses sold by wellness influencers. In 2017, pseudoscience clearing house GreenMedInfo published an article in which the writer described Pasteur as the “original scammer” who enabled “the pharmaceutical industry to dominate and tyrannically rule modern Western medicine.” If you can sell the public on a pathology of disease, the writer argued, you can sell a cure. 

He championed a return to nature as the real way to protect against disease: “Detoxing and seeking fresh whole foods and adding the proper supplements offer more disease protection from germs than all the vaccines in the world.”

Terrain theory has no greater proponent than Zach Bush, a physician who rightfully argues that the environment plays a role in health outcomes. But then he goes on to say that since there are billions of viruses, it must really be unhealthy tissues making the victim susceptible to disease — Antoine Béchamp’s exact argument. Bush claims that viruses are nature’s way of upgrading our genes, and any ailment must be due to a bodily imbalance.

This form of magical thinking is spread across his many web pages. Instead of conducting actual research on COVID-19 as an internist, Bush offered statements like this to his million-plus followers: “May this respiratory virus that now shares space and time with us teach us of the grave mistakes we have made in disconnecting from our nature and warring against the foundation of the microbiome. If we choose to learn from, rather than fear, this virus, it can reveal the source of our chronic disease epidemics that are the real threat to our species.”

In April, Bush told an Irish podcast that if he were to take a single course of antibiotics, his chances of “major depression over the next 12 months goes up by 24 percent.” Two courses, and he claimed that he would be 45% more likely to contract anxiety disorders and 52% more likely to suffer depression. The podcast’s hosts made a public apology, though Bush continues to be able to spread his misinformation. Inevitably, Bush sells a range of supplements “key to our overall health and wellbeing.” 

Watch what they say, then watch what they sell. If an influencer tells you Western medicine has failed you, be sure a product pitch is coming. Supplements are the main vehicle to monetization for wellness influencers since they don’t have to be clinically tested and little regulated, existing in a medical gray zone. Consumers mostly ignore the fine print on the back label because the promises on the front are so much more appealing.

Like Bush, influencers such as Jessica Peatross sell supplements and protocols to her well over 300,000 Instagram followers while consistently invoking Béchamp. “Terrain theory matters,” Peatross wrote in a March 2023 post. “When your body’s symphony isn’t in tune, or you are out of homeostasis, you are much more vulnerable to pathogenic invasion, cancer or autoimmunity.”

Last year, Peatross surrendered her medical license in California due to vaccine requirements. Now she sells subscription health plans. When signing up for her email list, you get a link to download her “Vaccine Protection & Detox Protocol.” 

All proponents of terrain theory put the onus of disease on the individual. They demand we each fend off the toxic effects of Big Pharma, Big Ag and all the other Bigs in existence through supplementation, meditation, breathwork, psychedelic rituals in Bali, or simply by thinking positively, thinking the “right way,” a learned skill for which they always have a course. 

Among the more notorious pushers of terrain theory doctrine was German physician Ryke Geerd Hamer, the inventor of Germanic New Medicine. In 1995, already discredited and stopped from practicing medicine in Germany, he diagnosed a 6-year-old girl as having “conflicts.” As a result, her parents refused to treat the 9-pound cancerous tumor in her abdomen. An Austrian court stripped them of custody, so that she could receive the chemotherapy that saved her life. 

Hamer, who died in 2017, believed medicine was controlled by Jewish doctors who used treatments like chemotherapy on non-Jewish patients. Perhaps unsurprisingly, many pseudoscience claims and conspiracies are rooted in antisemitism. Hamer also promoted the idea of microchips in swine flu vaccines and denied the existence of AIDS.

Germanic New Medicine is based on the “five biological laws,” which claim that all severe disease is due to a shock event. If the victim doesn’t immediately solve their conflict, the disease progresses in the brain. Microbes actually enter the body to heal it, provided the victim addresses the psychological conflict that led to the proliferation of the disease state. The victim heals after confronting the conflict, which Hamer thought nature had intentionally placed there to teach some sort of lesson. Death only occurs when you don’t face the trauma of the shock event. So that’s on you.

Disease exists to teach a lesson. A sunburn is light nutrition. It’s no wonder that Melissa Sell is one of the most vocal revivalists of Hamer’s theories, which she has renamed “Germanic Healing Knowledge.” She uses social media to share thoughts like: “You are not ‘sick’. Your body is adapting to help you through a difficult situation. When you resolve that situation your body will go through a period of restoration and then return to homeostasis.” 

Sadly, this is par for the course. With my podcast colleagues, Matthew and Julian, our review of conspiritualists found that the notion of an “ideal” body or way of being is widespread. As we document in our book, modern yoga was in part influenced by the famed 19th- and early 20th-century German strongman Eugen Sandow, whose adopted first name is a truncation of “eugenics.” 

Yoga originated in India, yet Sandow’s techniques found an audience among Indians in the late 19th century. Feeling emasculated and humiliated by British colonialists, many Indians appreciated Sandow’s overt masculinity and mimicked his strength techniques in a set of yoga postures that are now widely used. Indians craved bodily strength as a metaphor for overcoming colonial rule. Sandow came at it from the other side. He used his physique to further an explicitly racist world view. There was a reason why the strong white race dominated the world, he seemed to be saying — just watch me flex my biceps.

Wellness influencers similarly obsess over a strong and purified body. They assign similar causes to all ailments, which usually include poor diet, a lack of exercise, modern medicine and an inability to escape toxic stress. Sometimes, however, the influencer assigns physical attributes to the perfected body, which is why anti-trans bigotry and fat-shaming run rampant in wellness spaces. The ideal body, which can only be accomplished by resisting the evil mechanisms of allopathic (Western) medicine, is the true goal of nature’s design. Strangely, a number of these same influencers take no issue with cosmetic surgeries, botox or steroids, yet scream at followers for using deodorant or applying sunscreen. 

So what is the “right” sort of existence that lets the victim recover and achieve homeostasis, a state of internal balance consistent with Hamer’s five biological laws? According to Sell, as she explained on X, formerly known as Twitter, “The way to feel better is to think better thoughts.” Naturally, she has a number of online courses available to help you think better thoughts, ranging in price from $111 to $2,700.

In 1810, German physician Samuel Hahnemann came up with the term “allopathy” as a strawman to his concept of homeopathy. Whereas homeopathy means “like cures like,” allopathy initially meant “opposite cures like.” In the allopathic system, for instance, you take an antidiarrheal to treat diarrhea; in homeopathy, you take a laxative. Well, the “essence” of a laxative. 

Allopathy has come to mean anything involving Western medicine, while homeopathy is considered a natural system for healing (even though ground-up pieces of the Berlin Wall are used in one homeopathic remedy, and I don’t recall concrete ever forming without human intervention).

Hahnemann left his role as a physician in 1784 due to barbaric practices like bloodletting. He supported his family by translating medical textbooks. Inspired by Scottish physician William Cullen’s book on malaria, he slathered cinchona — a quinine-containing bark — all over his body to induce malaria-like symptoms. Hahnemann likely developed an inflammatory reaction, though he credited them as “malaria-like symptoms.” He then believed himself to be inoculated against malaria. This experience became the basis of homeopathy.

Instead of ingesting (or slathering on) small quantities of an offending agent, Hahnemann removed the active ingredient altogether from his distillations. He believed that less substance equals higher potency, and kept following that trail: Most homeopathic products contain no active ingredient.

Take Oscillococcinum, one of France’s top-selling medicines, which rakes in $20 million in America every year. The process of potentization — homeopathy’s dilution protocol — begins with the heart and liver of the Muscovy duck. Technicians mix 1 part duck heart and liver with 100 parts sugar in water. Then the process is repeated 200 times, which means any trace of the duck is long gone. The late family physician Harriet Hall pointed out that you’d need a container 30 times the size of the earth just to find one duck molecule. Yet it’s marketed to reduce flu symptoms. 

When a spokesperson for Boiron, the manufacturer of Oscillococcinum, was asked if their product was safe, she replied: “Of course it is safe. There’s nothing in it.”

Despite an absence of active ingredients, homeopathic products are often mistaken for herbal remedies, according to Jonathan Jarry, a science communicator with the Office for Science and Society at McGill University. In his article, Jarry cites a Health Canada survey that shows only 5% of Canadians understand what homeopathy entails. Pharmacies and grocery stores confuse customers by shelving these products next to herbal remedies and other medicines.

When I asked Jarry about the danger of consumer confusion, he said, “Homeopathic products are based on sympathetic magic principles and are not supported by our understanding of biology, chemistry and physics. So when they’re sold alongside actual pharmaceutical drugs, it creates a false equivalence in the mind of the shopper. It bumps homeopathy up to the level of medicine and turns its products into pharmaceutical chameleons.”

Homeopathy suppliers want it both ways: They claim their products are superior to pharmaceuticals while pushing to have them shelved next to actual drugs to obscure their difference. The name of their 100-year-old trade group? The American Association of Homeopathic Pharmacists.

Jarry has helped lead the charge for proper labeling of homeopathic products in Canada. Over the border, in the U.S., the Federal Trade Commission began regulating homeopathic products in 2016, though these efforts seem to have had little impact. The global homeopathic market is expected to reach nearly $20 billion by 2030.

Jarry thinks regulatory agencies must work harder to make clear that homeopathy is not based on science. But everyone passes the buck. “The pharmacists who own drug stores in which homeopathy is sold,” Jarry told me, “say that it’s up to the chain they work for to tell them to stop selling these products.” Meanwhile, “the chains say the products are approved by Health Canada, whose representatives say it’s up to pharmacists to use clinical judgment when recommending them or not.”

While the risk of injury is low given that most homeopathic products contain no active ingredient, there’s another danger lurking beneath the surface — people choosing to use these products instead of seeking out interventions that can actually help them. 

Avoidance of “allopathic” medicine is common in wellness spaces, the belief being that natural cures are better than anything concocted in a laboratory. The stakes are particularly high when it comes to mental health.

We’ve included a chapter called “Conspiritualists Are Not Wrong” in our book to acknowledge the fact that many people turn to natural remedies and wellness practices with good intentions. The American for-profit healthcare system can be a nightmare. We likely all have anecdotes of when the system failed us. Just as we all have likely benefited from Western medicine. It often depends on where your attention is most drawn. 

Like many wellness professionals, I lost a lot of income when the pandemic struck. All of the group fitness and yoga classes that I ran were gone overnight. My wife, who worked in hospitality at the time, lost her job. We were fortunate to have enough savings to get by, along with whatever income I pulled together as a freelance writer and by livestreaming donation yoga classes on YouTube. Our story isn’t unique, and it makes sense that wellness professionals turned to whatever revenue they could find. 

I wasn’t surprised to see so many supplements and online courses being marketed in the first months of the pandemic. But the sheer number of mental health interventions sold by wellness influencers was astounding — and concerning. Everyone seemed to have a hot take on mental health, and many leaned on the appeal to nature fallacy: You can heal depression with a supplement or a meditation practice or by cultivating the right mindset. 

“Holistic psychiatrist” Kelly Brogan, who is clinically trained but took a right turn even before the pandemic began, offers tapering protocols from antidepressants — even though none exist — to paying clients. True, pharmaceutical companies that know how to get patients onto their medications have never bothered to figure out how to get them off. But beware the influencer who writes, as Brogan does, “Tapering off psychiatric medication is a soul calling. It is a choice that you feel magnetized toward and will stop at nothing to pursue.”

Jonathan N. Stea is a clinical psychologist and adjunct assistant professor at the University of Calgary. A prolific science communicator, he doesn’t mince words when I ask him about wellness influencers who claim that natural remedies are better than antidepressants. 

“I’m tired of wellness influencers unethically opining on topics they’re unqualified to understand,” he said. “Notwithstanding the appeal to nature fallacy with respect to the idea that there are ‘better natural remedies’ than evidence-based psychiatric medications, it’s irresponsible to make such claims in the absence of scientific evidence.”

The paradox of the wellness industry is that you supposedly thrive when you connect with nature, yet you also need endless products and services. Self-professed metaphysics teacher Luke Storey, for example, sells over 200 products that offer the “most cutting-edge natural healing” that jive with his love for “consciousness expanding technologies.” How much healing does one really need? How contracted is consciousness that it requires so much expansion? 

It’s one thing to enjoy spiritual tchotchkes, but telling people these accouterments are necessary for salvation is disingenuous.

The problem is that people don’t necessarily feel better with these protocols or products. The way the wellness grift is framed — the notion that your thoughts dictate your reality — results in the adherent feeling worse if the therapeutic doesn’t work. They believe it’s a moral failing because charismatic influencers place the burden on them: “You didn’t do x or y hard enough.” So back on the treadmill they go.

Tragically, Stea said some people suspend antidepressant usage to chase magical-sounding cures. “Abrupt cessation of these medications can result in awful withdrawal symptoms,” he told me. “The other risk is that forgoing medications for unsupported or pseudoscientific treatments carry their own potential for harm, either directly due to the treatment, or indirectly by possibly worsening an untreated mental disorder.”

People in pain are vulnerable. Unfortunately, there’s no silver bullet for depression, anxiety or suicidal ideation. At least accountability exists in regulated spaces. Pseudoscientific sermons on TikTok have no such oversight.

Ideally, science tests claims with the best available means at the time. If better tools emerge, findings are updated. Conspiritualists are regressing in this regard. Their romanticization of 19th-century pseudoscience is a ruse that helps them sell products and services. 

In many ways, we’re victims of our own success. The advancements of the 19th century in public health, hygiene and drugs are part of the reason most of us are here today. Like the proverbial fish that doesn’t know it’s swimming in water, we’re all afloat in the hard-won progress of centuries of trial and error. 

We’re also not the same animals that gave birth to our line 100,000 years ago or even 1,000 years ago. For better and worse, we’ve drastically changed our relationship to our environment, just as we have drastically changed the environment. Glamorizing who we were neglects what we’ve become and how we got here. 

Michelle Wong, a science educator and cosmetic chemist based in Australia, told me that when the likes of Melissa Sell make their anti-sunscreen pitches, they rely on the appeal to nature fallacy. “There’s the idea that humans evolved with sun exposure,” she said, “so our skin should be able to handle it. But skin cancers usually develop after reproductive age (which is all that evolution helps us with). On top of that, migration and leisure, like beach holidays, means we get very different sun exposure compared to how we evolved.” As the 16th-century Swiss physician Paracelsus once observed, what heals in small doses kills in large.

The sun, in other words, isn’t to be feared, but we would do well to respect its power. And to not overestimate our own.

The post The dangerous myths sold by the conspiritualists appeared first on Coda Story.

Desta and his colleagues did their best to treat them, but by the time many arrived at the hospital, it was too late. “We tried to save so many lives,” he recalled, “but in most cases we were not able to.”

These were Desta’s early years as a physician, when one-third of all maternal deaths in Ethiopia could be linked to unsafe abortions. Thousands of women died each year. Under pressure to reduce the maternal mortality rate, the Ethiopian parliament passed a groundbreaking law loosening abortion restrictions for a variety of health conditions in 2005. The policy brought about a dramatic reduction in the number of deaths from unsafe abortions, and the bleak and overwhelmed hospital units that Desta remembers so vividly eventually shut down. The closure of the wards was “a success,” he explained. “I am a living witness that abortion care saves lives.”

But lately, Desta, who is now the Ethiopia program director for the global reproductive health nonprofit Ipas, worries that the dark days of those wards could become a part of Ethiopia’s reality again. That’s because the country’s abortion law is on shaky ground, thanks to the efforts of an emboldened anti-abortion movement buoyed by a court ruling halfway around the world: The U.S. Supreme Court’s historic 2022 decision to limit abortion rights in Dobbs v. Jackson Women’s Health Organization. 

The Dobbs ruling — which overturned Roe v. Wade, the landmark 1973 decision that established a constitutional right to abortion — marked an anomaly in the trajectory of global abortion policy making over the last 30 years, which has trended sharply toward liberalization. 

Since the ruling, there has been a wave of abortion-related policy shifts around the world. In France, lawmakers used Dobbs as the basis for a legislative proposal that would enshrine abortion rights in the French constitution. Mexico’s Supreme Court decriminalized abortion earlier this month, despite the country’s deep Catholic roots. There is mounting support for policies to protect legal access to the procedure in Argentina and Colombia.

Anti-abortion groups, meanwhile, see Dobbs as a signal that it may not be so difficult to roll back the gains made by abortion advocates. “The opposition has tasted blood in the water,” Lori Adelman, the acting executive director of Planned Parenthood Global, told me. In India, anti-abortion activists took to the streets of Delhi in the months after Dobbs, calling on the Indian government to repeal its 1971 law legalizing abortion. In Italy, pro-choice gynecologists are facing a fresh wave of harassment by an emboldened anti-abortion movement riding a post-Roe high. 

But nowhere has the anti-abortion movement been more energized by Roe’s overturning than on the African continent. While abortion is restricted across much of the region, those countries that have expanded access are now seeing a backlash.

In Kenya, opponents are already drawing on Roe’s reversal to challenge abortion policy. According to the international reproductive rights advocacy organization Fos Feminista, which recently published a report about Dobbs’ global impact, anti-abortion groups highlighted Dobbs as a reason to appeal a 2022 constitutional court decision in Kenya expanding abortion access. The ruling, which came out before Roe was overturned, affirmed abortion as a fundamental right in Kenya’s constitution, citing international jurisprudence on abortion, including Roe v. Wade. But opposition groups latched onto Dobbs as a reason to challenge the judgment, arguing that the judge who decided the case relied on “bad law” from the U.S. The decision is now stayed, pending appeal. “The fact that it was entertained is really worrisome to many that are working on the ground in Kenya,” said Kemi Akinfaderin, a global advocacy officer with Fos Feminista.

In Nigeria, the governor of the state of Lagos suspended policy guidelines about abortion care for life-threatening health conditions less than a month after Roe was overturned. Abortion opponents seized upon the U.S. Supreme Court’s decision, arguing that the governor should follow the ruling’s lead and revoke the provisions. In July 2022, he did. “The Dobbs decision has trickled down to Nigeria, and it’s very disappointing,” said Ijeoma Egwuatu, the communications director for the Nigeria-based reproductive health nonprofit, Generation Initiative for Women and Youth Network. 

For abortion opponents, the U.S. trajectory provides a possible model for reversing abortion gains.

“They are saying, ‘Dobbs is the wind we need behind our sails,’” Akinfaderin told me. “‘If we can do this in the U.S., we can do this anywhere else.’” For abortion advocates, it’s a glaring warning. “For the longest time, Roe has been seen as a gold standard,” Akinfaderin continued. “And so the fact that this can happen in the U.S. is a very clear indication to some in the feminist movement in Africa that it can happen here as well. These gains can be lost over time.”

Akinfaderin, who is based in Togo, believes that abortion opponents have strategically chosen where to focus their attention on the African continent. “They’re not making mistakes,” she explained. “They are targeting big countries, countries with political influence and countries with very strong religious communities.”

Enter Ethiopia, the second-most populous country in Africa after Nigeria and the home to the headquarters of the African Union. The country has a distinctive history and cultural legacy. It is one of just two countries on the continent that successfully resisted colonization. (Liberia is the other.) Ethiopia is also home to a distinct Christian Orthodox tradition dating back to the 4th century. Orthodox Christians are the country’s largest and most influential religious group, making up more than 40% of the population. One-third of the population identifies as Muslim and nearly one-fifth as Protestant. Abortion remains controversial in the country — surveys show the majority of Ethiopians, including Orthodox Christians, oppose the procedure. 

The policy reforms in Ethiopia in 2005 legalized abortion in a variety of circumstances, including if a woman was a victim of rape or incest, if her life is in danger, if she has physical or mental disabilities or if she is a minor and is not ready to have a child. The changes had a dramatic impact. Today, deaths from unsafe abortions make up just 1% of maternal deaths in Ethiopia, compared to over 30% before the law went into effect. 

But Ethiopian reproductive health advocates worry that those advances are now in jeopardy. Over the last year, the country’s anti-abortion movement has coalesced around a concrete goal. “They are targeting the abortion law,” said Abebe Shibru, a longtime reproductive health advocate and the Ethiopia country director for the international health nonprofit MSI Reproductive Choices. “Now, anti-abortion groups are intensifying their movement and they are targeting policymakers, health providers — anyone who might have a strong stake in sexual reproductive health services.” Because of this momentum, Shibru continued, “this existing abortion law is very vulnerable.”

Much of this organizing has taken place behind the scenes, according to Shibru, as leading anti-abortion figures attempt to influence lawmakers, government officials and the general population. But a few public demonstrations from anti-abortion groups in recent months offer a glimpse into the movement’s goals and direction.

In July, thousands of people took to the streets in the town of Hawassa, Ethiopia, to speak out against abortion and LGBTQ rights. Nearly two dozen churches in the city opposed to abortion and same-sex marriage organized the demonstration, according to local media. Participants carried signs and chanted slogans about fetal rights and explained that the protest was organized to “save the youth” from the “dangers” of same-sex marriage and abortion.

Weeks before the protest, healthcare workers began catching glimpses of vans parked near abortion clinics in Addis Ababa. The cars, emblazoned with the slogan “Praying to end abortion in Ethiopia,” written in Amharic, were spotted repeatedly throughout the city in June, according to Desta, from Ipas. “Whenever a provider sees this car parked next to the clinic, or a woman sees this information when trying to access services from these clinics, they’re embarrassed, they are harassed,” he told me. It’s unclear who was behind this effort, but Desta believes it reflects a more confrontational strategy from the opposition post-Roe. 

“Before the decision, they were not boldly coming out in the media and talking about abortion. But now, they are in the media, on TV  and on social media,” Desta said. “They are very vocal, very organized, and boldly speaking out about abortion in Ethiopia.”

According to Desta and other observers, one group leading the charge to repeal Ethiopia’s abortion law is Family Watch International, a U.S.-based nonprofit that claims to be working to “protect and promote the family as the fundamental unit of society.” According to the Southern Poverty Law Center, it is an anti-LGBTQ hate group. The organization’s leader has compared same-sex marriage to drug addiction and argued that the “homosexual agenda is a worldwide attempt to justify behavior that is inherently destructive to both society and to the individual.” 

While headquartered in Arizona, the organization has long worked in Africa and maintains an active presence in Ethiopia with an office in Addis Ababa, according to interviews with several reproductive rights advocates working there. After Roe was overturned, Family Watch wrote on its website that the decision was a “historic victory for life and family.” The organization’s Africa chapter, it added, is “working to stop abortion being pushed abroad.” The group’s Africa director is Seyoum Antonios, a prominent Ethiopian physician who recently railed against “the LGBTQ, abortion, and child sexualization and transgender agenda of the European Union” in an August speech to the African Bar Association. 

As of now, Ethiopia’s law is still standing. The forces jeopardizing its survival may not ultimately succeed in toppling the policy, and the transnational anti-abortion coalition — though energized — still faces an uphill battle if it wants to reverse global trends in abortion policymaking.

But even without a change in the law, the opposition’s efforts already appear to be having tangible impacts on the country’s abortion landscape. Over the last year, Shibru and his colleagues have noticed that some healthcare workers in public clinics have ceased providing abortion services — a likely result of the amplified pressure campaign against them. Shibru told me that providers are facing harassment from “their friends, their families, and their communities.” He added, “​When you go into public facilities, we heard that this facility used to provide safe abortion, but not now. Because we used to get good support, but now no one is encouraging us.” 

Additionally, Shibru said that he and other reproductive health workers have documented an increase in the number of women seeking medical treatment for abortion-related complications over the last year. Fewer clinics offering services could cause women to seek out unsafe alternatives, Shibru explained, and medical care for procedures gone wrong. These scenarios, coupled with the abortion law’s shaky standing, fill Shibru with dread. 

“​​What does it mean if the law is reversed?” he asked. “We are going back 20 years. That means more maternal mortality. Hospitals will be occupied with abortion-related problems.The women in Ethiopia in danger.” Such a scenario, he continued, “will be a big moral crisis.”

The post Roe’s repeal has energized Africa’s anti-abortion movement appeared first on Coda Story.

The investigation comes at a time when the Tennessee state government has been proposing a barrage of legislation to limit access to healthcare for trans people. On July 8, a ban on gender-affirming care for minors went into effect. A block on the ban by a federal district judge was temporarily overturned by the Sixth Circuit Court of Appeals, a higher federal court, in a split decision after an appeal by Tennessee Attorney General Jonathan Skrmetti.

In such a hostile atmosphere, Skrmetti’s demands for records from the Vanderbilt’s Clinic for Transgender Health have alarmed patients.

Chris Sanders, executive director at Tennessee Equality Project, an LGBTQ advocacy organization, told me that the parents of young trans people have expressed fears that their children might be targeted. “When you’re a parent intent on defending your child, this looks like danger coming down the road,” said Sanders. 

States with aggressive anti-trans laws like Texas and Florida have been seeking large swathes of data on trans people. In the wake of the VUMC revelations, people are asking if Tennessee is taking a similar path. 

In September 2022, VUMC battled claims on social media, including by conservative politicians and religious leaders, that their gender-affirming care services were morally and legally objectionable and amounted to “money-making schemes.” Nashville, due in part to the VUMC clinic, has been seen as a haven for people seeking gender-affirming options in Tennessee. In response to allegations of illegal conduct, Attorney General Skrmetti said he would “use the full scope of his authority to ensure compliance with Tennessee law.” 

VUMC was required by law to turn over records to Skrmetti’s office. In response to a request for comment, the Tennessee Attorney General’s office directed me to its statement on June 21: “This investigation is directed solely at VUMC and related providers and not at patients or their families. The records have been and will continue to be held in the strictest confidence, as is our standard practice and required by law. This same process happens in dozens of billing fraud investigations every year.”

But on social media, many feared that Skrmetti’s data sweep was a gross violation of the 1996 Health Insurance Portability and Accountability Act and that VUMC could have done more to protect confidential information. In one tweet, a person who said VUMC had shared their data and that they were “terrified” claimed to have “challenged it with a HIPAA violation report.” In another tweet, containing a news clip from Nashville’s WKRN station in which the mother of a trans teen says she felt betrayed by the VUMC, several of the comments suggested VUMC had committed a HIPAA violation.

Jolynn Dellinger, senior lecturing fellow on privacy law and policy at Duke University School of Law, says that while HIPAA “is a pretty good law it’s widely misunderstood.” It only applies, she told me, “to a very small number of covered entities. The vast majority of health data is not covered by HIPAA.” 

As VUMC is a hospital, HIPAA does in fact protect its patient records, conversations with healthcare providers, and billing information. This means that the information cannot be shared without consent, but exceptions are made for law enforcement requests such as subpoenas and court orders. In this instance, a VUMC spokesman told reporters, the Tennessee Attorney General had the necessary legal authority to obtain the data.   

According to Dellinger, laws that are looking to criminalize access to gender-affirming care and abortion care leave the door open for authorities to seek people’s health data. On June 16, attorneys general from 19 states, including Tennessee, signed a letter addressed to the Secretary of Health and Human Services voicing their objection to a proposed expansion of HIPAA protections that would prevent states from exploiting their authority to fish for data. The dissenting attorneys general insist that the rule change “would unlawfully interfere with States’ authority to enforce their laws, and does not serve any legitimate need.” While focused on access to abortion, the complaints of Republican-governed states apply equally to those seeking gender-affirming care. 

Laws that restrict bodily autonomy, whether it is access to gender-affirming care or abortion, leave people vulnerable to a set of threats from state authorities that very much include demands for digital data.

Dellinger fears that laws that criminalize access to health care disincentivize people from seeking the care they need because they feel they can’t trust their doctor or that their medical records will be seized. Dellinger also said, “Once criminalization comes into play, privacy risks grow.” In their letter, the 19 state attorneys general argue that HIPAA recognizes that “privacy interests must be balanced against the ‘public interest in using identifiable health information for vital public and private purposes.’” 

Despite Tennessee Attorney General Skrmetti’s assertion that the VUMC patients’ records will be held in the “strictest” confidence, it is unclear how long that data will be held by authorities and whether it will continue to hold the data even after its investigation is complete. For now, though, Tennessee has taken another step in the legislative war that it appears to be waging against healthcare for trans people.

The decision this month by the Sixth Circuit Court of Appeals is the first time a federal court has overturned a block on the banning of gender-affirming treatment. Courts have unanimously blocked such bans, points out the American Civil Liberties Union, in Arkansas, Florida, Indiana, Alabama and Kentucky. In a statement, the ACLU’s Tennessee chapter described the court’s decision as a “heartbreaking development for thousands of transgender youth, their doctors, and their families.”

Since 2015, reported the Washington Post, “Tennessee has enacted at least 14 laws that restrict LGBTQ rights — the most in the nation in that time frame.” On June 22, a federal judge dismissed a lawsuit filed by a group of trans women from Tennessee who wanted the right to change the designated sex on their birth certificates. 

“It’s hard to exist as a transgender person in Tennessee at this moment,” said Jaime Combs, one of the plaintiffs. And now the state is asking the trans people whose rights it seeks to restrict to trust it with their data.

The post Why trans people can’t trust Tennessee with their data appeared first on Coda Story.

On the last day of Pride Month, June 30, the court ruled to allow discrimination, under particular circumstances, against same-sex couples. By a majority of 6 to 3, the Court agreed that a web designer who opposes same-sex marriage could lawfully refuse to provide services for same-sex weddings.

This is just one in a litany of recent legislative and political assaults on LBGTQ+ rights. Conservative legislatures around the world have been targeting LGBTQ+ people, and especially transgender people, by denying them access to healthcare, dictating which public facilities are available to them, preventing them from speaking about their LGBTQ+ identities and, in the most severe cases, criminalizing their very existence. Here we reflect on Coda’s latest coverage of global LGBTQ+ rights and the trends these stories illuminate.

Florida, United States

In Florida, Governor Ron DeSantis continues to target transgender youth through restrictive legislation, banning access to gender-affirming care to all children under 18 and dictating which books Floridians can read and which bathrooms they can use. 

Reporting from Tallahassee, Rebekah Robinson tells the story of one family whose lives have been upended by the state’s anti-trans legislation. Milo, 16, and his family have made the difficult decision to leave their home and move 1,200 miles away, to Connecticut, to ensure that Milo can continue to access the medical care he needs. 

It’s not just limited healthcare access that has forced Milo’s family to move. With the expansion of DeSantis’ Parental Rights in Education Bill — the so-called ‘Don’t Say Gay’ law — teachers in Florida can no longer discuss gender and sexuality in the classroom. In addition, trans people in Florida are now prohibited from using public bathrooms consistent with their gender identity.

Florida may be only one state out of 50, but Republican legislation hostile toward transgender youth is popping up all over the U.S and will likely be a hot button political issue right up to the 2024 presidential elections. 

Russia

While Russia has recently dominated international headlines thanks to an attempted mutiny by Wagner Group leader Yevgeny Prigozhin, the Russian legislature has also been quietly cracking down on trans rights. A bill is making its way to President Vladimir Putin’s desk that will ban all gender-affirming care for transgender Russians. 

Tamara Evdokimova spoke with Russian psychologist Egor Burtsev to understand what effects a blanket ban on gender-affirming care would have on the trans community. If the bill passes as expected, trans people in Russia will not be able to access life-saving treatments, ranging from psychological care to hormone therapy to surgeries. This will trigger a nationwide mental health crisis and likely provoke violence against transgender Russians. 

Russia’s ban on transition-related care marks the latest escalation in Putin’s war against Western values. In November 2022, he signed a law prohibiting any activities that discuss or promote LGBTQ+ relationships. As Russia continues to wage war in Ukraine and further isolates itself from the West, vulnerable communities inside the country will face ever-greater risks of discrimination, violence and erasure.

India

Mirroring Vladimir Putin’s “family values” rhetoric, India’s government, led by Prime Minister Narendra Modi, has also been advocating against LGBTQ+ rights when it comes to marriage, arguing that permitting same-sex marriage would undermine Indian values. Some Indians have profited enormously by appealing to long-standing prejudice in Indian society against LGBTQ+ people, a prejudice seemingly endorsed, or at least tolerated, by the government. 

Alishan Jafri reports from northern India to tell the story of Trixie, a young transgender woman whose mother pushed her to undergo conversion therapy with a YouTube guru. Santosh Singh Bhadauria, better known as the “YouTube Baba,” specializes in conversion therapy and livestreams “healing” sessions to tens of thousands of viewers. Similar to televangelists, Bhadauria is a “godman,” a self-styled guru who has persuaded his followers that he possesses spiritual powers. 

Conversion therapy is illegal in India, and anyone subjected to it, as Trixie was, can take legal actions against the likes of YouTube Baba. The court system might offer some recourse to trans Indians, but with a federal government that advocates conservative, anti-LGBTQ+ views, homophobia and transphobia continue to prevail in many parts of the country.

Uganda

In March, Uganda virtually outlawed LGBTQ+ identity by criminalizing same-sex relationships. The 2023 Anti-Homosexuality Bill imposes draconian penalties for engaging in same-sex relationships, discussing one’s LGBTQ+ identity and renting or selling property to LGBTQ+ people — and institutes the death penalty for sexual assault and for having sex with people under 18.

And this is not the only law targeting gay people in Uganda, Prudence Nyamishana writes. The Assisted Reproductive Technology Bill, first proposed in 2021, targets Ugandans seeking fertility treatment by requiring them to be legally married in order to qualify for treatments. This bill heavily constrains the reproductive rights of unmarried women and LGBTQ+ people who want to have children, as Ugandan law does not recognize same-sex marriage. 

Both bills underscore a push among Ugandan legislators to align national laws with their notions of “morality,” rooted in Christianity — or, as the legislation’s opponents suggest, Christian fundamentalism. 

The post The global rise of anti-trans legislation appeared first on Coda Story.

At barely 16, Milo is the proud holder of a Florida learner’s permit, a state-issued driving permit. He has just finished 10th grade. His favorite class is journalism. He enjoys roller skating with friends. Milo is also transgender.

He glances in the rearview mirror as we drive away from Common Ground Books, Tallahassee’s only LGBTQ and feminist bookstore. The family, whose names we’ve changed to protect their privacy, bought half a dozen books to help pass the time on an upcoming road trip, most of them science and historical fiction.

The city is small. In less than 10 minutes, we pull into an empty parking lot next to a complex of sports fields and tennis courts that belong to Milo’s high school. The grounds are quiet — summer break has just begun. He points to an empty red running track on the perimeter of a football field, down the hill from the main school building. 

“That one dude, who’s doing everything wrong, is like right there.” He’s talking about Florida Governor Ron DeSantis, who lives just five minutes away. DeSantis often runs the track early in the morning while his security detail waits nearby.

In a few days’ time, Milo and his family will load up their car and say goodbye to Tallahassee, Florida, the only place their family has ever called home. They will begin the aforementioned road trip: a 1,200-mile journey to Connecticut, where they are hoping to build a new life, far away from the scorched-earth anti-trans laws that have become a hallmark of the DeSantis administration.

Milo is one of an estimated 16,000 transgender teenagers in the state who have become prime targets of DeSantis’ campaign to ensure, in his words, that Florida becomes a place “where woke goes to die.” Along with restricting access to gender-affirming healthcare for transgender people, his administration has placed legal limits on what can be taught in schools, which books can stay on the shelves of public libraries and which bathrooms people can use.

The American Academy of Pediatrics has urged legislators to protect young transgender people’s ability to receive “comprehensive, gender-affirming, and developmentally appropriate health care that is provided in a safe and inclusive clinical space.” The American Medical Association has written that gender-affirming care is medically necessary and that it can “improve the physical and mental health of transgender and gender-diverse people.” But Florida’s legislature still approved Senate Bill 254, a law that prohibits healthcare providers from administering gender-affirming care to anyone who receives health insurance through Medicaid, and for all people under 18, except for those who had already started treatment before the law was enacted. The policy went into effect in May 2023.

After the families of three transgender teens took the state to court, a federal judge issued an injunction that blocked the law from affecting the plaintiffs in the case beginning on June 6, 2023. While the case has yet to be decided, the judge wrote that Florida’s law likely runs afoul of constitutional protections against identity-based discrimination. 

But for now, state officials say the law remains in effect for everyone but the plaintiffs, and uncertainty prevails. Healthcare providers are unsure of what treatments they can offer. The fear of losing medical licenses or even facing felony charges has led clinics to turn transgender patients away. Some have shut down altogether, leaving young transgender Floridians with nowhere to turn. For many, the costs of seeking care out-of-state are simply too prohibitive. Milo is one of the lucky ones.

“I am just flying under the radar. I know other trans people at school who didn’t transition as early as I did,” Milo told me when we met last month in Tallahassee. “I consider myself incredibly lucky to have the parents and the health care that I do.” 

Milo came out as transgender when he was still in elementary school. Having supportive parents who were able to work together with his doctors made a huge difference, he told me.

Milo’s doctor became a critical figure in their lives. “He really helped us a lot,” his mother Beverly said. “He was one of the only people I found here in town that would adhere to the time frame that we wanted in terms of medical intervention.”

With careful guidance from his doctor, Milo began taking testosterone when he was 13. Since Florida’s law has an exception for those already receiving gender-affirming care, it doesn’t affect Milo directly, at least for now. But with some providers declining to serve transgender patients and others discontinuing their practices altogether, his parents worried that Milo’s ability to get adequate healthcare could still be in jeopardy.

For Milo’s family, an early sign of trouble came in June 2022, when Florida Surgeon General Joseph Ladapo wrote a letter to the state medical board arguing that there was a lack of medical evidence showing that gender-affirming treatments could be beneficial for young people grappling with gender dysphoria. Ladapo insisted that the leading medical guidance from organizations including the American Academy of Pediatrics followed a “preferred political ideology instead of the highest level of generally accepted medical science.”

“We didn’t see a course forward that would allow us to keep our promise,” said Beverly, Milo’s mom. “When we started this whole journey, we said, ‘We will do whatever it takes for you.’ We didn’t feel that was any longer going to be possible in Florida.”

Legal actions targeting education also put the family on notice. Milo recalled a moment when his younger sister came home in the middle of the semester with a note from her biology teacher, explaining that students would no longer be required to read “The Immortal Life of Henrietta Lacks.” This award-winning study on racist policies and practices in medical research in the U.S. became optional after Florida began vetting all school curricula and library books to ensure they’re free of pornography and “race-based teachings.”

Soon after, DeSantis signed an expansion of the Parental Rights in Education Bill, the so-called ‘Don’t Say Gay’ law, which prevents teachers from discussing ideas related to gender and sexual identity at any grade level. The law is set to go into effect this summer. Another law, also passed before the close of this year’s legislative session, will prohibit trans people from using public bathrooms consistent with their gender identity.

Senate Bill 254 was born out of a recommendation issued by the state’s medical board that had similar parameters — it advised doctors to deny minors access to puberty-blocking medications or hormones. The recommendation was an unusual move for the medical board, a group of state-appointed experts that has traditionally overseen the administration of licensing for physicians in the state and periodically issued recommendations to healthcare providers on public health-related issues, like the Covid-19 pandemic. The board has gone so far as to call itself “vociferously apolitical.” But an investigation by the Tampa Bay Times revealed that Governor DeSantis handpicked eight of the 14 board members, all of whom donated money to his gubernatorial campaign.

WUSF Public Media’s Health News Florida revealed that members of the American College of Pediatricians — an innocuous-sounding organization that the Southern Poverty Law Center has designated as a hate group — were paid tens of thousands of dollars by the DeSantis administration to provide “expert” reports, witness testimony and talking points discrediting the science behind gender-affirming care.

The medical board recommendation process constituted a unique route to banning gender-affirming care. Instead of starting out at the legislative level, DeSantis took advantage of the supermajority within his state to push his agenda through the executive branch. He then went on to codify the medical board recommendations with Senate Bill 254, officially banning gender-affirming care for minors and for anyone receiving health insurance through Medicaid.

The Republican supermajority in the Florida legislature, and at various levels of state and local government, has been in place for decades. Milo’s dad said it is wearing down people who are advocating for the rights of trans people. 

“It looks like an intentional undoing of democracy when they’re not listening to their constituents,” he told me. He wonders if the next election will bring more people out to vote and elect people willing to engage with public testimony rather than toeing the party line.

“DeSantis, more than anything, has really taken advantage of gubernatorial power that no one has in the past,” said Charles Barrilleaux, a political science professor at Florida State University. For him, the governor’s power shifted in the 1990s under Jeb Bush’s administration. And with the help of redistricting, Republicans gained more substantial control in local government. 

When you combine a supermajority with a politically ambitious governor, the voices of those who don’t agree with the government get drowned out. “Political competition matters, and when you don’t have competition because of districting, you don’t have representation of your own ideas,” said Barrilleaux.

State Senator Shevrin Jones has spoken out against the abundance of anti-LGBTQ legislation pushed through in Florida this year. As a Democrat, Jones is a minority in Florida’s Senate and has voted against adopting the gender-affirming care ban. In a January 2023 NPR interview, he said, “Florida is just the testing ground, but people across the country should be concerned that legislatures and governors across the country are going to do exactly what Florida is doing.”

For Milo’s mom, the onslaught of legislation further solidified the family’s decision to leave the state.

“You think to yourself, ‘Do I really need to uproot my whole family? Did I need to put my kids through all of this? Do we really need to change jobs to get new insurance? Did we really need to sell our house? Do we really need to spend all our savings on a new house? Is it really necessary?’” she said. “And then, something new happens every day, so I’m so glad we’re moving.”

The possibility of these kinds of laws spreading across the country was not lost on Milo’s family. When it came time to decide where to move, they struggled. Hostile legislation was constantly popping up around the country, especially in states with predominantly Republican legislatures. They started looking north. Maryland was safe but surrounded by less-certain places. California felt too far away. Other states looked like they were hanging in the balance, one election away from tipping toward transphobic policies. Eventually, they decided on Connecticut, where they also had some family. They chose a house in a quiet suburb, near the home of Milo’s cousins.

Milo and his parents talked to me about the immense privilege they had in being able to move their family. The move depended on job flexibility and on the sheer financial capital required to uproot and resettle in a more expensive state.

While I was in Tallahassee, I met others whose lives and families were directly affected by the law but who were not in a position to leave. Fenix Moon, a trans man and a visual artist, originally from Orlando, was one of them.

“I do want to go, but I can’t right now,” he told me. “Right now I’m on a one-year lease. I’m just getting stable from the pandemic exactly three years ago,” he said, alluding to financial burdens.

He told me his brother had begged him to leave Florida, fearful of what the legislation would mean for Moon’s health. What would make it possible for him to go?

“If I could wave a magic wand, if I had all the money, I’d probably go to New York,” he said. “I feel like that community would protect me,” he said. 

Moon sees leaving Florida as a powerful political choice too. “We shouldn’t sacrifice our health and our bodies, when in reality, the greatest pushback would be to relocate, if that is the case, and be stronger, and fight from wherever we are, right where we have the most strength,” Moon said. 

When people decide to leave a city, they take social and economic capital with them. “We’re losing a lot of talent, we’re losing a lot of people who contributed a lot to their local communities. We’re losing people in all kinds of fields,” said Melinda Stanwood, who teaches government classes at the Tallahassee Community College. 

Stanwood has two trans children. Her son, who is in his twenties, had to scramble to find a new doctor after his long-time provider at a Tallahassee Planned Parenthood clinic stopped serving transgender patients earlier this year. For now, both children plan to stay in Florida. But Stanwood is worried for them and has been vocal on the issue. “That strength that you have in the community, the diversity of support is being eroded gradually,” she said.

It’s hard to know exactly how many families are leaving, but Rick Minor, a Leon County commissioner, suspects that the numbers are rising.

“I do think it’s gonna have an impact in terms of bringing new businesses into the state that are looking for markets that are diverse and thriving,” Minor said.

He believes that Tallahassee can be an attractive place for businesses because it is home to several universities with diverse populations and lots of young people. But he says that’s not enough to convince businesses to come: “The types of communities like the one we have here in Tallahassee also exist in other states that don’t have these policies being passed.”

When I asked Milo what he’ll miss most when he leaves, he talked about his friends. 

“I have a whole group of friends that I didn’t have last year. Last year, I was a freshman, so I was still building everything,” said Milo. “Now, I’m a sophomore, so I have stuff already put in place, and I don’t want to leave that.”

“It’s hard to see that as a parent and to know that you’re changing those friendships that could have been richer if you had stayed. But we can’t continue here,” Beverly told me. “Friendships won’t be enough for what he needs.”

Milo’s school itself holds a lot of traditions for the family. His mother and grandmother are alumni. From where he sits in his math class, if he looks out the window, he can even see the building where his parents got married.

But the school also sits just a 15-minute walk from the state capitol and the governor’s mansion. DeSantis’ physical proximity to their community is “kind of crazy,” Milo told me.

“If Florida wasn’t being Florida, then I would stay here for sure,” Milo said. “But Connecticut is going to be safer ultimately.”

At school, Milo has never told his classmates or teachers that he is transgender. But during the past semester, Milo slowly started coming out to more friends. “I want to be honest with them because I’ve known them for a while, and I don’t want to have to lie to them about why I’m moving because I care about them,” he said.

His parents tread even more carefully. “In some cases, I said, we have to leave Florida. It’s a family issue. And I left it at that,” Phil told me. But, when it comes to their family and others familiar with Milo and his trans identity, Phil found that he didn’t have to explain much.

“I just said, I’m leaving Florida, and universally the response from everyone was, ‘I don’t blame you.’ Every single person said the exact same thing,” Phil said.

Toward the end of the school year, with moving day looming, Milo wanted to enjoy his last days doing what he loves best. Going skating, hanging out in parks and walking around Railroad Square, the city’s small, mural-covered arts district. When I asked what he was looking forward to about the move, he talked about his hope for getting more involved in the school community at his new school. 

“My focus is just like finding a social group,” Milo said. “As far as school, I have always had pretty good grades. But I just want to find a good friend group and join the newspaper at my new school.”

In spite of all that the past year has brought, Milo is optimistic about what the future holds for him.

“There will be new places, new people, and a new culture. I’m curious about up north, apprehensive and excited,” he told me. “I’m not going to stop being me if I move, right?”

The post Fleeing Florida appeared first on Coda Story.

The ban on legal and medical gender transition marks the latest escalation in Russia’s crackdown on LGBTQ+ rights. In November 2022, Russian President Vladimir Putin signed a law prohibiting any activities that promote “non-traditional sexual relationships,” effectively outlawing any books, films, media and online resources that discuss LGBTQ+ people.

The bill outlawing gender-affirming care must still pass through Russia’s upper house of parliament and be signed by Putin, but in the event of its likely adoption, it will prevent transgender people from accessing life-saving treatments, ranging from psychological care to hormone therapy to voluntary surgeries. 

According to Egor Burtsev, a clinical psychologist who has worked with transgender and LGBTQ+ patients in Russia for over 10 years, the abolition of gender-affirming care amounts to “torture.” 

Burtsev, who left Russia in April 2022 out of concern for his safety and now lives in Lithuania, worries that the new law will precipitate a mental health crisis in Russia’s trans community, amplify the stigma that LGBTQ+ Russians have long faced and trigger violence against transgender people in Russia. To better understand the far-reaching consequences of a ban on gender-affirming care, I spoke with Burtsev on Telegram. 

This conversation has been edited for length and clarity. 

The Russian parliament has passed a law banning legal and surgical sex changes. What impact will this have on access to medical and psychological care for transgender people? 

What they are proposing is a complete abolition of gender reassignment procedures, surgeries and hormone therapy for transgender people. It is a complete ban. What consequences will this have? Transgender people remain, but the procedures are banned. A transgender person — someone who has been undergoing hormone therapy for 10,15 years, who’s looked completely different for a long time, socialized in a completely different way — is suddenly deprived of the possibility to receive hormone therapy. The body changes, not quickly, but it changes, there are all kinds of reversals, transformations. And the relationship with one’s body, for transgender people, is quite complicated. What we will see is the highest risk of depression, the highest risk of self-harm, the highest risk of suicide.

All possible channels of any kind of medical care will be cut off. Transgender people are not going anywhere. They can’t change how they feel, what their gender identity is, because the authorities ordered it. They’re being thrown overboard. And I would equate this to torture: depriving transgender people of medical care, hormone therapy and any psychological help that might have been available before.

Trans people have been left completely without help and in a terrible position of fear, humiliation, discrimination, stigma.

Russia is not the only country adopting laws against gender-affirming care. In the U.S., for example, Florida recently passed a bill that made it illegal to provide gender-affirming care to trans children under 18. From a medical perspective, is it necessary to have any restrictions on who, and at what age, should be able to undergo a gender transition?

There is a wave of such anti-gender movements in the world right now. Conservatism and neoconservatism are coming to the fore. The wave of anti-trans movements is sweeping the world, and Russia has actively, happily joined in. Even some quite democratic countries are not succeeding on this front right now. But that doesn’t mean that this situation won’t change, because democracy works somewhat differently. Democracy doesn’t work like this, with one vulnerable group receiving help while another gets discarded.

As for helping trans children under 18, that’s a very controversial issue. There is no uniform policy on this. It’s understandable that the first feeling the idea evokes is probably bewilderment: ‘How can we allow something like this to happen before a child turns 18?’ But as a psychologist who’s worked mostly in Russia, where gender transition was allowed from the age of 18, I usually recommend to parents to simply provide support, to call the person by their name and use their pronouns. And according to statistics, this dramatically reduces the risk of suicidal behavior — just accept the child, call them what they like. 

It is important to give people the right to decide for themselves, from a certain age, what will happen with hormone therapy and to give endocrinologists the opportunity to help people intelligently, clearly, taking into account their circumstances. 

Based on what you’ve seen in your practice, what have been some of the challenges — medical, interpersonal, social — for transgender people in Russia?

The first problem has to do with socialization. It begins with a person becoming aware of themselves and bringing themselves before society — this is the coming-out process. And the first problem is usually related to acceptance: by family, friends, colleagues, classmates and so on. Of course, there’s the constant stigma. There is also a huge problem with accessing healthcare that has always been there. 

Because the stigma is so layered, so varied, trans people experience different challenges. Often  they experience trauma, stress and suicidal ideation. Episodes of depression can be pretty severe. A large percentage of transgender people experience depressive states. Anxiety is also extremely common. All of this happens because the stigma and the discrimination all over the world, and especially in Russia, are quite strong. 

Can you briefly explain the legal and medical process that a trans person in Russia needed to go through if they wanted to transition, before this law was passed? 

The transition procedure in Russia was one of the best in the world. We were even a little proud of it, because in recent years, Russia was preparing to adopt ICD-11. This is the 11th revision of the International Classification of Diseases, in which ‘transsexualism’ is excluded from the list of psychiatric conditions. The removal of this psychiatric diagnosis was a huge victory for the trans community. Plus, with the exclusion of this diagnosis, the procedure for changing one’s gender marker has been simplified in many countries. That is, people simply come in, declare their desire to transition and have different procedures. 

We had commissions in Russia that issued permits [to transgender people]. The commission consisted of a psychiatrist, a clinical psychologist and a sexologist. People came before these commissions, had conversations and were diagnosed. Afterwards, they received written permission to change the gender marker in their passport without any legal obstacles. The procedure was quite humane. Before that, less than 10 years ago, this process still required surgery. You had to have at least one surgical procedure. And, in many countries of the world, this requirement still remains.

There has been a lot of talk from the Russian government about protecting “traditional values.” Putin often says that soon, in the West, children will have a “Parent #1” and a “Parent #2,” instead of a mom and a dad. 

One of the major problems that Putin and some other politicians — or, rather, the entire State Duma — have is that they don’t pay attention to science-based approaches. They don’t look at the science, they don’t look at the research, they don’t know what they’re proposing. They just engage in populism in the service of power. 

The whole world is moving toward greater diversity, there is no stopping it. We see it in our teenagers — who are 15-16 years old, who are not interested in politics because of their age, who are more interested in relationships and their own identities — and in how they construct their identities, how they look at relationships, how they experiment. They have a much more open view on things. The world, for them, is much more multilayered, not black-and-white like it is for government representatives, who tend to be quite old.

Does the government’s position reflect prevailing attitudes toward transgender people? 

I think in many ways it does. Because there is such a thing as propaganda, and propaganda shapes the average Russian’s public opinion. And if propaganda works, then quite a few people really are transphobic, homophobic. I’m afraid there will be a lot of violence against LGBTQ+ people and against transgender people. There will be murders, there will be violence. It’s very scary. It’s a nightmare.

So, fearing exactly that, LGBTQ+ people are now panicking and trying to escape to somewhere else. But trans people tend to be financially disadvantaged. It’s very hard for them to move, they don’t have the right documents, they don’t always have passports. They find themselves trapped inside [Russia] with this society. 

But there is an alternative, there are, of course, people who are more progressive, who think for themselves. Some have left for now, but many have stayed in the country. They just shut down, they keep quiet, they don’t actively speak out, because staying safe right now is paramount. As soon as there is a chance to exhale, we will hear those voices. And I really hope that someday the situation will begin to change for the better. We must all work together to change it.

The post Russia’s ban on gender transition amounts to ‘torture’ appeared first on Coda Story.

In the U.S., one special breed of telehealth companies tends to focus on “wellness” issues common among people in their 20s and 30s: Companies like Cerebral, Hims & Hers, Keeps and Mindbloom offer a quick path to prescription medications for anxiety, depression, sexual health and skin-related issues. They also tend to feature a sleek, Instagram-friendly aesthetic.

Hims, launched in 2017, uses the tagline: “Telehealth for a healthy, handsome you.” For years, I’d noticed ads for Hers, its sister brand, dotting my social media feeds and featuring on the walls of subway cars. I finally visited the Hers website and found a banner stretched across the homepage: “Anxiety treatment, no insurance required. START YOUR FREE ASSESSMENT,” it read. Curious to learn more, I clicked on the link.

After a short intake assessment, the platform told me to wait for a provider evaluation that would also take place entirely online. If prescribed, the medication would be delivered to my door, as soon as possible. In the meantime, I could browse the site to see what kinds of drugs they prescribe. Brand names like Lexapro, Wellbutrin and Zoloft float across the sections for medication featuring the website’s calming, sage-green color palette. The site also sells health and sex-adjacent products like melatonin gummies (to help you “get the sleep of your dreams”) and USB-rechargeable vibrators (because “life’s too short for boring sex”). The familiar shopping cart icon in the upper right corner of the site reinforced the idea that I was here to buy something, not to seek a professional medical consultation.

It felt almost too easy. I didn’t see it through — I see a regular doctor at a regular brick-and-mortar clinic. But it left me wondering how other people might understand — or misunderstand — what the service really offers. Hims & Hers and companies like it often adopt the language of telehealth that we see coming from established healthcare providers, a practice that might give consumers the impression that the company has their best interests at heart. But these companies aren’t regulated in the same way that traditional healthcare providers are. And they are out to make money. In the first half of 2021 alone, venture capitalists invested nearly $15 billion into digital health companies.

In the eyes of Dr. Adrianne Fugh-Berman, a pharmacology researcher at Georgetown University, “there’s real telehealth and there’s fake telehealth.” Real telehealth, she explained, was an asset during the worst periods of the pandemic. And for years, it has helped people with limited mobility, or those who live in far-flung places, get access to specialist clinicians who tend to work in big city hospitals.

But then there are fake telehealth outfits, which Fugh-Berman described as “companies who are really just bypassing clinicians to provide drugs to patients.” 

“There’s a prescriber involved,” she said, and that clinician does provide some level of safety. But she cautioned that they ultimately answer to the telehealth company, not to a traditional medical institution. “Their job is to prescribe you drugs,” said Fugh-Berman. If they deny a lot of people drugs, “they are not going to keep that job.” 

In traditional healthcare, patients typically see a primary care provider who can recommend treatment, medication or otherwise, with their full health status and history in mind. Although traditional healthcare institutions have been caught bending to the interests of big pharma — a major factor in the U.S. opioid crisis — there are regulatory measures in place to prevent this. New-fangled telehealth companies do not have the same guardrails.

Fugh-Berman runs Georgetown’s PharmedOut program, a project to help educate healthcare professionals on pharmaceutical marketing practices. According to PharmedOut’s resources, companies that use direct-to-consumer advertising are not subject to FDA regulations if they provide “disease awareness,” even though these sorts of campaigns can “lead to the overuse of marginally effective or potentially dangerous drugs for minor conditions.” PharmedOut warns that this practice can harm public health, especially as more companies rely on social media ads to get in front of potential customers.

Although it’s rare, plenty of the antidepressants that these companies prescribe can cause serotonin syndrome, a serious and potentially fatal response. The anxiety drug propranolol, described by Hims & Hers as a medication that can help you ace “a public speaking engagement, interview, or audition,” can trigger asthma attacks for people with the disease. Last year, Bloomberg investigated the telehealth company Cerebral, which focuses on mental health treatment, and found that patients were prescribed medications that led to complications and even death from overdoses. In short, the actual health risks that these companies might present for consumers are real.

Then there’s the matter of the telehealth companies’ business model. Alongside payments for the services they provide, companies like Hims & Hers also collect a good deal of customer data. We all know what it’s like to be asked to consent to the terms of service of data privacy agreements. They’re incredibly long, written in legalese and impossible to negotiate with. If you want the service, you select “I agree” and hope for the best.

The mere fact that these companies deal with people’s health data might make customers think that it will be covered by HIPAA, the U.S. federal law that requires healthcare and insurance providers to protect sensitive health information from being disclosed without patient consent. But just because you’re sharing your health data does not mean it’s protected. In fact, Hims & Hers’ privacy policy mentions that it is not a “covered entity” under HIPAA. This suggests that the company is collecting demographic data and medical information, as well as images and messages, all on behalf of the diagnosing providers and with no guarantee of privacy protection under U.S. law. We asked Hims & Hers for more information about their business and how they handle customer data but did not receive a response prior to publication.

What happens to your data after it is collected? Researchers have shown that it can be bought and sold by third-party data brokers. Last year, The Markup reported that private information about the medications prescribed through telehealth services (Hims & Hers was among those they tested) had been shared with Big Tech companies like Meta, Google and Snapchat. This data is often used to improve ad-targeting and prompt customers to purchase even more products or services based on their browsing habits. But it could be used or abused in other ways, too.

The lack of HIPAA oversight over some telehealth companies is a concern for Keith Porcaro, who researches law and technology at Duke University. He explained that these kinds of companies can get around privacy protections that traditional healthcare companies would otherwise be subject to and said that regulations need to catch up with the market.

“Companies like this are changing people’s expectations about healthcare,” he said. “There’s an assumption, especially if you talk to doctors, that there’s sort of one model of getting care: You go to your doctor and rely on doctors for everything. Putting doctor shortages aside, there’s a lot of evidence that says that most people take care of most of their health problems on their own,” Porcaro told me.

Bypassing traditional healthcare routes in favor of for-profit, start-up companies may be making consumers more vulnerable to medical misinformation. Influenced by a growing self-care movement that has popularized the idea that “you know your situation best,” consumers increasingly turn to these companies. 

Porcaro puts some of this on people’s legitimate “mistrust of the medical establishment,” based on their negative experiences with traditional healthcare. In a 2022 Pew research study on race and disparities in healthcare, more than 70% of Black female respondents between the ages of 18 and 49 said that they had had a negative experience with healthcare providers, ranging from pain they reported not being taken seriously to being treated with less respect than other patients. The same report found that most Black Americans were skeptical of “medical researchers when it comes to issues of openness and accountability” and suspected that misconduct in medical research remains just as likely to happen today as in the past. Long-standing stigma may drive prospective patients to seek alternative routes to healthcare. But people looking for quick solutions might be willing to accept help from just about anyone. 

“People who are going to services like this, especially mental health or addiction treatment, are vulnerable,” Porcaro said. And they’re not just vulnerable to misinformation, he said, “they’re vulnerable to actual harm.”

The convenience and branding of telehealth start-ups may have plenty of appeal for Gen Zers and people with legitimate reservations about the medical establishment. But they come with some serious trade-offs that could affect your health data — and your health itself.

CORRECTION [05/15/2023 11:08 AM EDT]: The original version of this story said Duke University lawyer and technologist Keith Porcaro. Keith Porcaro researches law and technology at Duke University.

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On April 6, Trixie found herself standing on a stage, before the shaven-headed, heavyset Baba himself. With cameras rolling, two men held her in place while the Baba, draped in long white robes, accused her of being infected with the “disease of queerness.” By posting videos like these on social media, the Baba has made a fortune in just three years. He claims to have a “godly” cure for terminal illnesses and a variety of other personal and psychological complaints. 

He also specializes in conversion therapy — in which he claims to “pray the gay away” — and offers a special prayer package to “reconvert” transgender people and align their gender identity to the sex they were assigned at birth. Trixie’s family paid about $1,830 for her “treatment,” a sizable sum in a country in which the average monthly wage is below $500.

The Baba’s promises to banish homosexuality and to “cure” transgender people appeal to longstanding popular prejudices in Uttar Pradesh and other parts of India. Even the federal government is currently arguing in the Indian Supreme Court that gay marriage is an “urban elitist concept.” For most of the country, the government insists as it attempts to put the brakes on the Supreme Court hearings that would determine whether India should legalize same-sex marriage, the “notion of marriage itself necessarily and inevitably presupposes a union between two persons of the opposite sex.” And this notion is “deeply embedded in religious and societal norms.”

From his estate, the Baba regularly livestreams his “healing” sessions to tens of thousands of viewers. His most popular videos on YouTube, where he has a verified channel, have surpassed one million views. He also commands an impressive following on Facebook, where he maintains multiple pages. His social media pages all link to the ashram’s website, which boasts testimonials from his patients, instructions for devotees and a market for the Baba’s health products.

The Baba — aka Santosh Singh Bhadauria — is what is known in India as a “godman,” a self-styled guru who has managed to persuade people that he possesses spiritual powers. Godmen are similar to televangelists, and their followers might once have been called holy rollers. As with televangelists, godmen are frequently found to be conmen, criminals and sex offenders. Bhadauria has been in trouble with the law for decades, accused of various crimes though yet to be convicted of any.

Last month, a doctor who challenged Bhadauria by calling out his theatrics as cheap quackery was allegedly assaulted at Bhadauria’s behest. Among the types of cures Bhadauria enacts in public spectacles on his estate, attended by thousands of followers, is the ritual “murder” of “Muslim ghosts” that he claims have possessed the bodies of Hindus. The Muslim ghosts are exorcised with a toy gun.

Trixie knew little about Bhadauria’s methods before agreeing to visit his ashram. She was just trying to keep her parents happy. On reaching the estate, she found that a recording of his exhortations was being broadcast to hundreds of devotees. People were screaming and crying as if they’d been possessed by a spirit, she said.

Uncomfortable with the atmosphere, Trixie tried to walk away but says she was physically restrained by the Bhadauria’s security. The next morning, Bhadauria showed up in person. He addressed Trixie’s family directly. Homosexuality, he said, was a disease, and Trixie, as someone infected by it, was “filled to the brim with filth.”

Her mother stood beside her, silently watching as Bhadauria continued to rant. That was when Trixie realized, she told us, that she had lost her mother to the propaganda, a far more cruel betrayal than Bhadauria’s crude abuse. 

“Parents can be wrong sometimes too,” she told her mother in front of Bhadauria and the audience. They were the only words she would utter during the “therapy” session. Had she tried to argue her case, she told us, she would have felt “like a dog barking without reason.” 

Bhadauria’s conversion therapy is emblematic of the transphobia and homophobia of Indian society. This prejudice is seeing a resurgence as the Supreme Court prepares to rule on the question of same-sex marriage. Despite a long history of gender fluidity in Indian theology, mythology and culture, the Hindu nationalist government led by Prime Minister Narendra Modi argues that the push for LGBTQ rights is a result of increasing Western influence and the decline of so-called Indian values. 

The Indian judiciary, though, has taken a more liberal line. Consensual gay sex was decriminalized in India in 2018, when the Supreme Court overturned a colonial law. “History owes an apology to members of the community,” said one of the judges, “for the delay in ensuring their rights.” And last year, a state high court ordered the prohibition of conversion therapy, ruling that it constituted misconduct when performed by medical professionals. 

If the Supreme Court does legalize same-sex marriage, it would be yet another ruling that defies the values and beliefs of some of India’s most powerful political actors. While no judgment has yet been made, trolls have targeted the court on social media and its chief justice was attacked as “woke” even before he was appointed to the bench. Government officials and mainstream media personalities have also piled on, insisting that the judges would be undermining tradition and imposing their own values on the country. Religious representatives from all of India’s major religions, in a rare show of togetherness, have teamed up to oppose the marriage equality petition before the Supreme Court.

Social activist Indrajeet, the founder of “Yes, We Exist,” a digital LGBTQ+ awareness initiative, told us in an interview that although the Indian right wing says same-sex marriage is a Western imposition, Indian conservatives are also taking their cues from the West. In the West, particularly in the United States, transphobia has become an endemic political hot-button topic and is similarly framed as an issue beloved by liberal elites rather than one of existing civil rights being unequally applied. 

The Indian government says it is for elected legislators to decide on the fate of same-sex marriage rather than for unelected judges. But the Indian constitution — as a government website helpfully points out — gives all Indians the right to equal treatment before the law.

It is to the courts that a transgender woman like Trixie has to turn to get redress for the ordeal she was forced to endure at Bhadauria’s ashram. “If you do not self-determine and do prayers to be a boy,” Bhadauria said to Trixie, “you’ll become a girl and will get beaten by boys. Even if you marry a boy, he will beat you too.”

Turning to Trixie’s mother, Bhadauria said, “The only way left to cure him is by doing prayers. If he doesn’t do it by himself, you should do this for him.” Bhadauria also insinuated that Trixie’s transition was sexual in nature, a perversion rather than a deeply felt identity. This vein of transphobia has been contested at length by scholarship on and by queer people. 

Pointing to the scholarship, though, is not always a helpful strategy when confronted by hate speech on social media and the socially permitted behavior of quacks like Bhadauria. Indrajeet, the founder of the LGBTQ+ awareness initiative, explained that social media sites have become key platforms for the likes of Bhadauria. Their brand of hate is easily spread on these platforms and enables them to attract new followers and expand their reach. It also allows them to monetize their polarizing content. 

Although many of these social media pages and channels are riddled with hate speech and discriminatory messages, platforms routinely fail to take action against violations of their own rules of conduct.

For instance, though Meta does not offer clear guidance about organic content promoting conversion therapy on Facebook, the company expressly prohibits advertisements offering such services. Google (YouTube’s parent company) prohibits the promotion of conversion therapy in its publisher policies. Both companies have a broad ban on the kinds of hate speech and discriminatory language that characterize Bhadauria’s content.

Bhadauria’s video of his encounter with Trixie was highly visible both on Facebook and YouTube for two weeks after their “therapy session.” It has since been removed from Facebook, but the video is still up on YouTube, where Bhadauria has 439,000 followers. Indrajeet and other activists we spoke with expressed concern that these videos, spread by spiritual leaders with significant social influence, could be used to justify physical attacks on queer people in the public eye.

Zainab Patel, a trans woman, activist and one of the petitioners in the pending marriage equality Supreme Court case, told us that Bhaduria’s attempt to “treat” Trixie is against Indian law. All forms of conversion therapy against queer people were banned in 2021 by the National Medical Commission of India which described such therapy as “professional misconduct,” following an order from the Madras high court which has jurisdiction in the southern state of Tamil Nadu. 

These therapies can take the form of pseudo-religious rituals but can also involve measures as extreme as “corrective rapes.” Independent research has proven that conversion therapy practices increase the risk of self-harm among queer people. It is why, Zainab says, it is essential that legal action is taken against self-appointed holy men like Bhadauria.

“After watching Trixie’s video,” Zainab told us, “we can say that she has been subjected to humiliation, stigmatization and discrimination.” Trixie’s parents, Zainab added, “along with the spiritual person to whom she was taken, can both be punished under the Transgender Protection Act.” This also means that both Facebook and YouTube could be compelled, by a court order, to remove the material. But so far, most of the footage remains online, garnering thousands of views and untold advertising revenue.

Akkai Padmashali, a transgender rights activist, pointed out that while in other democracies the numbers of openly homosexual and bisexual legislators are growing, India’s LGBTQ community has no representation in parliament to stand up for their concerns. Instead, the court case on marriage equality has become an opportunity for politicians to grandstand on matters of religious tradition. “I believe that I am bound to follow constitutional morality,” Akkai told us, “and not any social construct, cultural or religious morality.” But, in India, that is an increasingly rare position.

For Trixie, her ordeal does have a silver lining — she has found her voice and an inner strength. She counts it as a small victory that the video of her conversion therapy is no longer on Facebook. Now, she says, she is ready to take on more transphobic propaganda on her Instagram, where she has found many new supporters and followers.

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In early March, Ugandan lawmakers approved the 2023 Anti-Homosexuality Bill that brings back life imprisonment for same-sex relationships and imposes a slate of new penalties for related offenses. This extends as far as restricting Ugandans from saying that they’re gay and speaking about LGBTQ topics. It even prohibits land owners from renting or selling to LGBTQ people. The bill also dictates that “aggravated homosexuality,” which includes sexual assault, but also sex with a person under 18 years of age, is punishable by death.

The bill is now waiting for approval from Ugandan President Yoweri Museveni, who has never been shy about his homophobia. During his State of the Nation address on March 16, Museveni called gay people “deviants.” In 2013, when the country’s original anti-gay law passed, local opposition, international outrage and a ruling by the country’s Constitutional Court defanged the policy. But the sentiments behind it appear to be driving legislative action once again.

But this is not the only law in progress that seeks to curtail gay people’s rights in Uganda. Another bill has come to the surface recently that would further cement state power over the private lives of LGBTQ people, as well as those of unmarried women. 

Proponents of the Assisted Reproductive Technology Bill, an effort to regulate infertility treatment, say it would protect people seeking these services and healthcare professionals that provide them. But the bill also requires anyone seeking fertility treatment to be married under Ugandan law. As such, it discriminates against all unmarried Ugandans who might want to have children, regardless of their gender or sexual orientation.

First proposed in December 2021, the bill had flown under the radar until a former Ministry of Justice attorney, Samantha Mwesigye, called attention to it on Twitter last month.

“That the Ugandan parliament is even considering tabling this is a travesty not only because of the unconstitutionality of the bill but because Uganda is and should be a progressive society,” Mwesigye told me. She also noted that Ugandan women are increasingly deciding to take the parenting journey on their own.

Rose Wakikona, an expert on reproductive health rights at the Center for Health, Human Rights and Development in Kampala, sees links between this bill and the anti-homosexuality bill. 

“The purpose of this bill is to pass a law that expressly kicks out sexual and gender minorities from having children,” she said.

In its current form, the assisted reproductive technology bill would heavily constrain the reproductive rights of unmarried women and LGBTQ people who want to have children of their own. Ugandan law does not recognize same-sex marriage. 

As the bill acknowledges in the introduction, infertility takes a toll on people who want children. And childlessness, and the decision not to have a child, are both heavily stigmatized in Uganda. It should come as no surprise that those who seek fertility treatment prefer to go on with it privately. 

The bill could also threaten people’s privacy — and thereby potentially run afoul of Uganda’s constitution. If the bill were to pass, married couples would be required to present proof of marriage prior to accessing in-vitro fertilization or surrogacy services. They would also be subject to a medical examination “to ascertain that the married couple suffers from infertility or other health challenges” and compelled to prove that they have been having unprotected sex for one year but have failed to conceive a child. The bill does not indicate how, exactly, state officials expect couples to provide such proof.

Healthcare providers who work in this area declined to speak with me about the bill. “This is a very sensitive topic,” said a worker at one fertility clinic. Their silence was not surprising, given increasing threats to the freedom of expression in Uganda.

Both the assisted reproductive technology and the anti-homosexuality bills speak to a broader push among legislators to align Ugandan laws with notions of “morality” rooted in Christianity. 

Dr. Sarah Opendi, the country’s health minister who is now a member of parliament, is the bill’s main sponsor. Opendi has a history of promoting policies tied to “family values” and traditional notions of morality and is a co-sponsor of the 2023 Anti-Homosexuality Bill. She also caught the attention of young, progressive Ugandans last year, when she pushed forward a motion to ban Nyege Nyege, an annual electronic music festival that attracts thousands of people from around the country and beyond. Calling for the festival to be canceled, Opendi argued that it “breeds immorality” and “recruits” young people into the LGBT community.

Fox Odoi-Oywelowo, one of only two parliamentarians who voted against the anti-homosexuality bill, told openDemocracy that support for the bill was “fueled by Christian fundamentalism.” In 2020, openDemocracy reported that U.S.-based Christian right groups, many with close links to the Trump administration, spent at least $50 million on campaigns that sought to undermine the rights of women and LGBTQ people across Africa. The Fellowship Foundation, a group with strong ties to David Bahati, the parliamentarian who wrote Uganda’s original anti-gay law in 2009, gave the Ugandan government $20 million between 2008 and 2018.

Mwesigye also expressed concern that Christian fundamentalists might have had a hand in promoting the assisted reproductive technology bill. “Lawmakers need to stop moralizing legislation,” she said. “There must be a separation of the church and the state, because the state knows that it is bound to protect the constitutional rights of Ugandans. We cannot have members of parliament citing the Bible and the Quran on the floor of parliament.”

It remains to be seen whether the bill will pass the test of constitutionality. Bills of a similar nature have been tabled and passed in the Ugandan parliament but rejected by the Constitutional Court.

If the anti-homosexuality bill should pass, LGBTQ people in Uganda will be barred by law from seeking out some of the most fundamental components of a healthy and fulfilling life. It will become a crime to seek love and speak about your identity. Even finding a place to live can lead to criminal penalties for your landlord. And if Opendi’s bill should pass, an important avenue for having a child will be outlawed too.

The post Uganda is targeting reproductive rights alongside its ‘anti-gay’ bill appeared first on Coda Story.

“Everybody is in a kind of chaos right now,” said Joseph Knoll, a nurse practitioner and the CEO of Spektrum Health, a community-based health center located in central Florida that specializes in medical and mental health services for the LGBTQ community and beyond. He told me that the new rules leave healthcare professionals who provide this care “feeling helpless.”

Doctors and other practitioners who violate the ban could lose their medical license and be hit with hefty fines. Many are even considering leaving the state, given the uncertainty of future restrictions on their practice. Part of the dismay comes from feeling that the deck has been unfairly stacked. Local news outlets have reported that Florida Governor Ron DeSantis appointed all the members of the “vociferously apolitical” Board of Medicine, several of whom made contributions to his campaign totaling $80,000. DeSantis is reportedly considering running for president in 2024 and gender-affirming care is an issue that many conservative lawmakers have been pushing across the country.

Florida is now one of 10 or more states that have passed similar legislation. In Utah, the state passed a law at the beginning of the year to ban any healthcare professional from providing any gender-affirming treatments to minors or face a felony charge. In February, South Dakota passed a similar law for minors in which medical professionals providing such treatments stood to lose their licenses. Georgia followed in March. And just days ago, West Virginia enacted a ban on gender-affirming therapies, though it made exceptions for teenagers considered to be at risk for self-harm or suicide. 

Florida, unlike the other states, initially chose not to take a legislative route, instead moving ahead via state medical boards. A bill, though, is currently making its way through the Florida House of Representatives to codify the ban on gender-affirming care. This bill also includes a ban on changing the sex as recorded on a birth certificate, prohibits health insurance providers from covering any treatments related to youth transitioning and prohibits organizations that provide transition-related healthcare to minors from receiving public funds. 

Already, this has led to clinics shutting down preemptively. Outlets reported that the Johns Hopkins All Children Hospital in St. Petersburg and Nicklaus Children’s Hospital in Miami, among others, stopped accepting new patients into programs that provided hormones or puberty blockers well before the law went into effect. The fear of prosecution leaves few providers still offering these services.

With clinics closing and the high potential consequences for providing care, medical professionals are increasingly forced to choose between staying in an environment that makes it challenging to provide the necessary medical care to their patients or leaving to continue practicing elsewhere. 

“Our primary service line is gender affirming treatment,” Knoll, the Spektrum Health CEO, told me, “but we’re a community healthcare clinic that does primary care as well.” He says he is now faced with the choice of abandoning all patients because his clinic’s survival is at stake. “Gender affirming treatment represents somewhere between 50% and 60% of our services,” he said. “Obviously, our biggest concern is the care of people that need to access our services, but we have to be realistic. We don’t have room in our budget to have half of our revenue gone.”

He told me he’s heard of colleagues who are taking the option to leave Florida. The consideration weighs heavily for his transgender staff members. “For them to stay in the state of Florida,” Knoll said, “they have to accept the lack of access to health care while working at a healthcare organization. I mean, it’s nonsense.” 

Nurse practitioners like Knoll play an essential role in this equation. They can prescribe medication, promote disease prevention and diagnose common ailments, often providing this care directly in clinical settings. In 2020, Florida passed a law that grants nurse practitioners full authority to autonomously practice primary care. Losing these healthcare professionals drastically affects the communities they serve. 

Vernon Langford, the president of the Florida Association of Nurse Practitioners, wrote in an email that the state has “a bad shortage of healthcare professionals now and it is not getting better anytime soon.” It’s hard to know exactly how many medical professionals are leaving and what their exact reasons are for doing so, but a 2021 report for the Florida Hospital Association estimates that the state will face a shortage of nearly 6,000 primary care physicians by 2035. The lack of physicians makes it difficult for all patients seeking care in Florida, especially those in rural areas. Additionally, more care providers will be needed as the population increases and ages. A state facing significant shortages in care needs to be able to attract and retain talent. 

The new rules are not helping. Langford said Florida needed to remove barriers to accessing care, not create additional hurdles. “The culture wars have seeped into healthcare,” he said, which introduces more restrictions for the work of nurse practitioners. There has been an increase, he added, “in the desire to relocate to states that have more favorable practice environments.” 

As bans and restrictions on gender-affirming spread around the country, perhaps the only option left for patients who need this care is to file legal challenges. Four anonymous transgender minors sued the state this month, arguing that the medical bans “violate the Equal Protection Clause of the Fourteenth Amendment” and should, as unconstitutional legislation, be thrown out. “It is,” Langford told me, “a very sad thing to see when vulnerable populations are being targeted.”

The post Florida’s ban on transgender care pushes doctors to leave the state appeared first on Coda Story.

“Something that happened to me and was beyond my control has left me like a machine that’s been switched off – disabled – unable to do anything that a 21-year-old of my intelligence and interests might want or need to do,” she wrote.

That young correspondent, Maeve Boothby O’Neill, spoke Russian, listened to jazz and read constantly. She loved musical theater, especially the shows “Wicked,” “Billy Eliot” and “Into the Woods.” She was plotting out a series of 1920s mystery novels set in the villages of Dartmoor, an upland expanse of bogs and rivers and rocky hills in southwest England where Maeve and her mother had once lived.

Maeve died on October 3, 2021. She was 27. On the death certificate, her physician noted “myalgic encephalomyelitis” — an alternate name for the illness known as chronic fatigue syndrome — as the cause. It is rare for a death to be attributed to either ME or CFS. 

An inquest into the circumstances, including the actions (and inactions) of clinicians and administrators at the local arm of the National Health Service, or NHS, is expected to be held later this year. Maeve was diagnosed with the illness in 2012, after several years of poor health. She fought hard to access appropriate medical care and social service support from institutions and bureaucracies that did not seem to understand the disease.

“She did everything she could to survive,” wrote Sarah Boothby, Maeve’s mother, in a statement she prepared for the upcoming inquest. The NHS “did not respond to the severity of Maeve’s presentation, and failed in its duty of care,” wrote Boothby, adding that her death was “premature and wholly preventable.”

Maeve’s father and Boothby’s ex-husband, Sean O’Neill, a journalist at The Times, brought widespread attention to ME in a series of articles, including one last year about Maeve. His “creative, courageous” daughter, wrote O’Neill, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”

Myalgic encephalomyelitis is frequently triggered by an acute viral or other infectious illness, although it has also been associated with exposure to environmental toxins, including mold. Patients have been found to suffer from a range of immunological, metabolic, neurological and other dysfunctions. Core symptoms include profound exhaustion, a pattern of relapses after minimal exertion known as post-exertional malaise, brain fog, poor sleep and heart rate irregularities that lead to dizziness or nausea when in a standing position. Standard therapies have focused on symptomatic relief since the underlying causes remain unknown and there are no diagnostic medical tests.

According to the U.S. Centers for Disease Control and Prevention (CDC), between 836,000 and 2.5 million people in the country have what it refers to as ME/CFS, and most remain undiagnosed. In the U.K., the estimates range from 125,000 to 250,000. Many patients are unable to work, climb stairs or even perform basic daily functions without assistance. 

As a journalist and public health academic, I have been investigating and writing about ME for several years. I have learned how it can devastate the lives of patients and their families, not least because mainstream medicine has framed it as largely psychosomatic — a modern version of what would once have been diagnosed as hysteria or conversion disorder. 

From the start of my project in 2015, I found it to be enormously intellectually and emotionally rewarding. But no one besides desperately ill patients took much notice. Editors at major news organizations couldn’t be bothered. Academic colleagues were polite but perplexed at my dedication to this obscure domain. At gatherings with friends, I could tell they’d had enough after the fifth or eighth time I’d mention the latest developments in the field. 

Viral epidemics always leave in their wake a small percentage of people experiencing chronic complications that have no identified cause. And the prolonged medical complaints being reported by millions of people around the world after acute coronavirus infection include some of the key symptoms that define ME. 

Patients, clinicians, scientists and journalists are debating and investigating the overlaps between the two conditions. While long Covid is a grab-bag term for an extremely diverse group of patients, some are receiving clinical diagnoses of ME or ME/CFS, as it is often called these days. 

And just as ME patients have long felt dismissed or misunderstood, long Covid patients have had similar experiences. As I reported last year for Coda, for example, doctors unable to continue working because of long Covid have been dismayed that their medical colleagues often tell them their cognitive impairment and repeated relapses are physical expressions of pandemic-related trauma. Conditions like ME and others that lack definitive medical tests — such as irritable bowel syndrome, Gulf War Illness, fibromyalgia and various forms of pain — are often lumped together into a category called “functional” disorders or “medically unexplained symptoms,” known as MUS.

The emergence of long Covid has focused widespread attention on a long-simmering debate that has previously been confined largely to academic and medical circles: Do these functional and medically unexplained ailments arise mainly from ongoing disease processes or from depression, anxiety, post-traumatic stress disorder and related psychiatric conditions?

All around the world, leading scientists and clinicians regard long Covid as a heterogeneous disease. They are seeking to elucidate its many pathophysiological pathways and find drug targets for therapy. In December 2022, the CDC reported that long Covid “played a part” in 3,544 deaths in the U.S. from the start of the pandemic through June 2022.

Another camp is applying the psychosomatic lens to long Covid. The experts in this group also hold impressive academic status, receive significant research funding and publish in respected journals. They witness the same phenomenon and see something completely different: A global tsunami of mass hysteria leading to paralysis, gait disorders, memory loss, inability to remain upright without feeling sick, repeated flu-like relapses and a list of other complaints.

Medicine has a long and sorry history of bias and discrimination on the basis of sex. Given that ME and other functional and medically unexplained disorders are known to be much more prevalent among women, it is not surprising that patients with these conditions routinely report receiving poor treatment and even abuse at the hands of the healthcare system. Physicians frequently prescribe psychotherapy and exercise programs based on their presumption that emotional or mental distress, negative or unhelpful thoughts and/or unhealthy behavior patterns are causing the persistent problems.

It goes without saying that stress, anxiety and related factors can have negative health impacts and exacerbate underlying ailments and that psychological support and lifestyle adaptations can help alleviate distress, including among people with chronic conditions. But when it comes to medically unexplained illnesses, mistakes in interpreting symptoms can visit trauma and despair upon patients and families. 

Last May, an Irish court ordered a hospital to pay a young man 6 million euros for having failed to diagnose a brain tumor, an error that delayed necessary surgery by months. Doctors had misdiagnosed his headaches, concentration problems and hand numbness as “psychological and functional” and referred him to “the mental health services and physiotherapy,” according to the Irish Independent.

Physicians can be quick to default to psychological explanations when they don’t understand what is causing a patient’s problems, noted Brian Hughes, a psychology professor at the University of Galway, in a blog post about the case. (Professor Hughes is a friend and colleague.) 

“It would be nice if the doctors concerned could perhaps try to be a little less hasty, and a bit more humble,” he wrote in the post. “The phrase ‘Medically Unexplained’ does not mean ‘Medically Unexplainable.’ Just because you don’t know what’s wrong with a patient doesn’t mean that nothing is wrong with them.”

Maeve Boothby O’Neill was born in 1994 in London. Her parents divorced when she was five, and from then on she lived with her mom in southwest England — first in Dartmoor, and then in Exeter, a major university town.

In pulling together the following account, I spoke multiple times with Maeve’s mother, Sarah Boothby, via social media as well as in her cozy flat on a quiet road a few blocks from Exeter’s High Street — the same flat where Maeve had struggled with her declining health and where she’d died the previous fall. While there, I reviewed three fat clip binders stuffed with copies of Maeve’s medical and social service records, voluminous correspondence, reams of handwritten notes and journal-type entries, applications for social benefits and related documents and writings.

The Royal Devon University Health NHS Trust, which oversees the hospital where Maeve sought care during the last months of her life, did not respond to an email seeking comment.

From an early age, Boothby told me, Maeve adored “storytelling” in all its forms and loved being surrounded by books. She wrote her first play — or rather, she dictated it — when she was seven. “She played happily in her imagination for days on end,” said Boothby.

Maeve expressed her opinions early. During a family vacation to southern Spain, Boothby recalled, Maeve, then four years old, declared: “What’s the point of Spain? It’s too hot!” At 10, she became a vegetarian out of both principle and gustatory preference.

In the summer of 2007, when Maeve was 12, both she and Boothby came down with what felt like a mild viral illness. Boothby recovered completely after four weeks. But according to Maeve’s diary from that time, she still felt exhausted weeks after the acute sickness.

(Boothby read the diary after Maeve’s death. It opened with this advisory: “The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve.” Boothby posted the following snippets and others from the diary on Twitter. )

“God I am TIRED,” Maeve wrote on August 7. On August 11: “Oooohh . . . tired . . .” August 12: “I am still vair [very] tired! Why?! Mum has said she wants me to stay in bed all day and rest :¿ (got a tiredness headache too. Ow ow ow ow).”  August 17: “in bed – still tired :(”

Besides the references to exhaustion that pepper the diary, Maeve also expressed delight about compelling personal matters — celebrating her birthday, getting a new dollhouse, visiting her dad in London.

Just after 11 p.m. on August 25, the night before her birthday, she wrote:

“It is 53 minutes until I’m 13! OMG! We (me & dad) went shopping today…the plan tomorrow is to have a nice breakfast then a picnic with PINK CHAMP [champagne].” And at midnight: “I am officially 13 years old and have made it to TEENAGERDOM!” 12:01 p.m.: “Wow! I’m 13!”

Over the next few years, Maeve’s exhaustion increased, sometimes accompanied by punishing headaches. She began fainting while engaged in gym class, school sports, dancing and even walking. Her social life dropped off significantly and she reduced her school attendance to essential classes only, although she managed to keep up her grades.

Two general practitioners examined Maeve, found nothing wrong and dismissed her symptoms as “normal for a girl of her age,” said Boothby. A pediatrician referred Maeve to psychological services while telling her “the symptoms were all in her mind,” wrote Boothby in her inquest statement.

“She was only 15 and doubted herself for years afterwards,” Boothby told me.

Spontaneous remission from ME is relatively rare, although the disease is known to fluctuate. Many patients remain more or less stable for years, and some improve slowly. Others, like Maeve, experience a gradual decline, for reasons that remain unclear. It is estimated that about a quarter of patients are home-bound or even bed-bound. 

In 2012, despite her reduced class attendance, Maeve graduated from high school in Bristol, where she and her mother were living for a year. She earned top grades in Russian, biology and English literature. She’d long imagined a career involving travel, foreign languages and international relations.

In a photo of Maeve on her 18th birthday, she glows with good humor. Her bright face is graced by a half-moon smile and framed by a tangled mane of brown hair. Her eyes are focused on some point to the left of the camera. She seems, like many her age, to be brimming with ideas and secrets and vital insights. Unlike her peers, she was too sick to attend university and explore her future.

That year, Maeve was finally referred for assessment to a clinic specializing in CFS/ME, as the illness was then often called, at a hospital in Bristol. Although the intake and diagnostic process dragged on for nine months, a specialist at last confirmed that she had the illness. In a subsequent email to the specialist, Maeve expressed relief at getting the news.

“It feels very empowering to finally have a diagnosis and some external recognition of my symptoms, to know that it’s not all in my head!” she wrote.

Shortly afterwards, Maeve and her mother returned to Exeter, where she contacted the local CFS/ME clinical service and reviewed their guidelines for treatment and care. These guidelines recommended a behavioral and psychological approach to recovery based on the hypothesis that patients like Maeve were extremely out of shape from remaining sedentary and harbored dysfunctional beliefs about having an organic disease that caused them to relapse when they did too much.

For decades, two related interventions were viewed as the standard-of-care for ME. A specialized form of cognitive behavioral therapy was designed to alter patients’ faulty beliefs so they would do more. An approach to increasing activity called graded exercise therapy (GET) was designed to reverse their physical deconditioning so they would do more. A major British study called the PACE trial, with the first results published in 2011 in the Lancet, appeared to demonstrate that these treatments led to significant improvement and even recovery.

The information Maeve received in 2012 conformed to this approach. Leaflets advised her that “many people with CFS/ME have unhelpful thoughts,” which include “catastrophizing,” “eliminating the positive” and “all-or-nothing-thinking.” Instead of adopting these patterns, the leaflets advised, patients should ask themselves questions like: “What alternative views are there?” and “How would someone else view this situation?” and “Am I focusing on the negative?”

Maeve found this approach useless but did see a specialist in Mickel therapy, a cognitive approach popular in the U.K.. In a journal entry, Maeve wrote that, according to the therapist, “I should have more fun and be more childlike” and “my body’s ‘message’ is: my symptoms are here to tell me to stop containing my emotions and start expressing them honestly now.” 

She dropped the therapy after a couple of sessions. “It isn’t working for me,” she wrote. “If anything it’s making me worse, because I’m worrying about not having fun.”

As advised by the CFS/ME service, Maeve kept a meticulous activity diary in an effort to determine her “baseline” — the amount she could do without triggering the relapses that characterize post-exertional malaise. The goal was to increase the amount over time in order to nudge her body to improve. Maeve regularly struggled to stay within her limits.

In an email to the doctor who diagnosed her, she expressed concern that her legs ached after any physical activity. “Don’t worry about the aching of the legs,” the doctor replied. “That will not go until you enter a phase of sustained improvement — then it will, I promise you!”

“I’m looking forward to entering a period of sustained improvement so I can have my legs back!” Maeve responded in a follow-up email.

The doctor’s promise proved to be illusory. Maeve never entered a period of “sustained improvement.” Eventually, she realized her baseline was around 30 minutes of activity a day. If she exceeded it, she suffered a relapse — or a “crash,” as patients called it. And as she struggled to accept this restriction, she crashed again and again.

In the years since the Lancet and other journals published findings from the PACE trial, medical and public health experts — including me — have documented that the study includes egregious methodological and ethical missteps. Related research has also been shown to be poorly designed and fraught with bias. In 2015, I wrote a 15,000-word exposé of the PACE trial that garnered significant media and scientific attention, and I have continued to criticize research in the field. 

In 2017, the CDC rescinded its recommendations for CBT and GET as treatments for the condition. The CDC website now flatly declares: “ME/CFS is a biological illness, not a psychologic [sic] disorder…These patients have multiple pathophysiological changes that affect multiple systems.”

On October 31, 2021 — less than a month after Maeve’s death — the U.K.’s National institute for Health and Care Excellence, or NICE, issued new clinical guidelines for ME/CFS that reversed the agency’s own prior recommendations for the two treatments. In a review of studies, NICE assessed the quality of evidence in favor of GET and CBT, including from the PACE trial, as either “very low” or merely “low.”

The new guidelines highlighted the symptom of post-exertional malaise, which it called post-exertional symptom exacerbation, and warned of possible harms from graded exercise. The guidelines approved of psychotherapy for supportive care only — not as a curative treatment.

Maeve read everything she could discover about her illness and sought out whatever she thought might help. She found yoga and meditation helpful. She explored the possibility that she suffered from a deficiency of carnitine, an amino acid essential to energy metabolism. At various times, turmeric, B12, aspirin, the gastrointestinal drug famotidine and the gout drug colchicine seemed to provide some symptomatic relief.

She had to fill out exhaustive applications in order to obtain funds for basic expenses like buying a wheelchair and hiring care personnel. In her London Review of Books essay, she protested at the indignity of having to prove to a “mean and punitive government” that she was not malingering or faking it but was actually very sick and reliant upon benefits to survive.

“To access my right to this welfare payment,” she wrote, “I am required to prove my life has been devastated, presenting it as a collection of medico-historical facts about all the things I can’t do, which reminds me of all the things I might have wanted to do and makes my existence sound abject and pitiful.”

Records of correspondence with medical and social service agencies show multiple occasions of missed calls and misunderstandings about appointments. In a journal entry, Maeve expressed irritation at the inefficiencies and delays involved in dealing with the public institutions responsible for ensuring that everyone could access care and assistance. “It makes me angry that I’m supposed to get free treatment at the point of need, AND I FUCKING NEED IT NOW AND IT TAKES A MONTH FOR ANYONE TO LIFT A FINGER TO EVEN THINK ABOUT HELPING ME,” she wrote at one point.

At other times, her comments conveyed a sense of hope, however fragile. “I am still young and will get better,” she wrote in one application for benefits. “But no one can tell me how long it will take.”

Such hope notwithstanding, the scope of activities Maeve could perform gradually dwindled. “Over time, she became unable to cook, wash up, change her bedlinen, clean her room, apply for and renew her welfare benefit entitlements, make or attend appointments or go outdoors without assistance,” wrote Boothby in her inquest statement.

Maeve also experienced challenges with food intake. “Sometimes I have to wait for enough energy to eat — lifting a fork to my mouth requires energy I don’t have,” she wrote in one social service questionnaire.

ME or CFS has only rarely been cited as a cause of death. In England and Wales, the illness was cited as the underlying cause or as a “contributory factor” in only 88 deaths from 2001 to 2016, according to the U.K.’s Office for National Statistics. Malnutrition is among the most serious possible life-threatening complications. In very severe cases, patients can become unable to ingest sufficient nutrition because they have difficulty chewing and swallowing. 

At that point, tube-feeding — via a tube inserted down the throat or directly into the stomach through the abdomen — can be necessary to prevent death from malnutrition. William Weir, an infectious disease and ME specialist in London, has treated several patients who have been tube-fed for extended periods before improving enough to be able to eat on their own. 

Unfortunately, Dr. Weir told me, doctors who don’t understand ME often view malnutrition in severe patients as if it were a psychiatric issue like anorexia. “Patients with this illness are frequently regarded as having a psychological disorder that causes them to be deliberately and perversely inactive without any regard for the possibility that their inactivity actually has a physical basis,” he said.

By early 2021, Maeve’s condition had deteriorated to the point where she was unable to consume enough food, even with her mother preparing liquified meals. Boothby and Maeve’s GP at the time advocated for her to be hospitalized so she could have a feeding tube inserted. In mid-March, Maeve was admitted to the Royal Devon and Exeter Hospital. Noting that her tests appeared to be normal, the staff physician refused the tube-feeding request. 

“They kept treating her as if she was making it up,” said Boothby.

Maeve was discharged without a plan for providing her with sufficient nutrition at home, Boothby noted in a chronology of events of the last months of Maeve’s life that she prepared for the inquest. She was “unable to sit up, hold a cup to her lips, or chew,” wrote Boothby, and “all her symptoms were now highly exacerbated.”

Further deterioration in Maeve’s condition led to a second hospitalization in May. By then, Dr. Weir had examined her and found her to be extremely debilitated. In a phone call and a follow-up letter, he recalled, he urged the hospital physician overseeing Maeve’s care to insert a feeding tube.

The hospital did not follow Dr. Weir’s advice. The doctor, Boothby wrote, was “adamant she would not tube feed Maeve and told Maeve she would ‘feel much better if you gave your hair a wash.’” 

Again, Maeve was discharged without a plan for home care, according to Boothby. “She was completely immobilized except for being able to turn her head from side to side,” she wrote. “Her voice could not rise above a whisper. She was unable to reposition in bed or to lie on her side.”

During a third hospital admission that summer, a naso-gastric tube was finally inserted. But by that point Maeve’s body was unable to tolerate the hospital’s tube-feeding regimen. She responded with bouts of pain and constipation, which caused crashes and further exacerbated her condition. The tube was removed, and she was again discharged. 

On August 27, 2021, Maeve turned 27.

When tube-feeding fails, another possible option is total parenteral nutrition, in which the digestive system is bypassed and patients are infused through a vein. In a letter dated September 9, 2021, Dr. Weir warned the chief executive of the Northern Devon Healthcare NHS Trust, which runs the hospital, that Maeve’s situation looked dire if this approach was not adopted.

“I have experience of similar cases leading to death and Maeve’s current clinical status shows all the initial hallmarks of this,” he wrote. “I am not exaggerating the issue when I say that this [total parenteral nutrition] may well save Maeve’s life.” 

Maeve ultimately refused to be readmitted because the hospital would not guarantee that she would receive total parenteral nutrition, according to Boothby’s written chronology. Maeve knew that without nutritional support she was going to die, Boothby told me, and she wanted to die at home — not in the hospital while being denied care. 

“She said, ‘At least we tried, mum,’” said Boothby.

Maeve continued to deteriorate throughout September and received morphine for pain. On October 1, according to Boothby’s written chronology, Maeve “said she was experiencing mild hallucinations.” On October 2, she exhibited “rapid shallow breathing, racing heart, eyes rolling.” 

At 1:45 a.m. on October 3, “Maeve was awake but incapable of utterance or focusing.” At 3 a.m., she was found dead. Doctors confirmed her death at 11 a.m., and her body was removed to a funeral home in the early afternoon. 

That evening, Maeve’s GP visited Boothby. “She said she had never had a patient so poorly treated by the NHS,” wrote Boothby. 

The inquest, which is not yet scheduled, will presumably shed light on the events that led to Maeve’s death and on the hospital’s actions in the matter. Philip Spinney, the senior coroner for Exeter and Greater Devon, declined to be interviewed but noted in an email that the process is at the “evidence gathering stage” and that the inquest itself could last at least two days. 

Given the prominence of Maeve’s case, the inquest and its findings could receive significant publicity. Boothby told me she would like the investigation to “expose as many facts as possible to public scrutiny.” 

Beyond that, she hopes it will demonstrate “how socially, morally and ethically unjust it is to deny a biomedical cause to ME” and will lead to recommendations for preventing more deaths like Maeve’s. “She died by the incomprehension and disbelief of an acute hospital,” said Boothby.

The post When the doctor doesn’t listen appeared first on Coda Story.

On a Sunday afternoon in February of 2022, a daunting task loomed before me. I had to document my competency for a certificate in grief therapy, although I had no background in mental health. I logged into a continuing education company’s website and launched the six-hour pre-recorded workshop. 

Then I pressed the mute button and went about my day. I baked garlic bread, caught up with some friends, binged a Netflix show and took a nap.

Six hours later and $239.50 lighter, I took the final test. My grade was 35 out of 38; I passed with flying colors. I proudly downloaded my “certificate of successful completion” from a continuing education provider called PESI, although I had no intention of actually hanging out a shingle as a certified bereavement practitioner.

Why would I do such a thing? I’m an investigative reporter, and I wanted to see how hard it would be to game the system and pass the test without taking the course. As it turned out, it was ridiculously easy: The answers to the final quiz are summarized on the handouts shared prior to the test. 

Like several other online education organizations, PESI provided certifications in grief counseling for non-professionals and professionals alike. I applied for my Grief Informed Professional certification offered by Evergreen Certifications, a company owned by PESI. But Evergreen rejected my application, informing me that I needed to  demonstrate a background in mental health. 

However, the grief therapy industry was buzzing with other options, and I turned to an online education outfit called Udemy, signing up for its “Grief and Bereavement Counselling ACCREDITED CERTIFICATE”  – advertised for just $9.99, reduced from $94.99. The course was described as a “first step towards a professional career as a ‘bereavement counsellor.’” This turned out to be an even speedier ride than PESI. I bought the course at 1:37 am and received my certificate of completion at 1:39 am.

Wait, what?! Here’s a breakdown of the blitzkrieg: The course was divided into 24 lectures; I clicked the checkbox next to each of them to confirm my attendance and moved on to the 10-question quiz, which was the last requirement to obtain my certificate. Then, as I was answering the second question, my certificate arrived by email. Call me a teacher’s pet but I felt that I should finish the test anyway. I did, earning a 100% score without opening any of the lectures or studying the material.

A Udemy representative who responded to my interview request declined to talk about the certificate because, she said, she was “not a certified mental health professional.” 

“When we get to the area of certifications, it’s the Wild West,” said Jason Washburn, a board-certified clinical psychologist, professor and chief of the psychology division in the Department of Psychiatry and Behavioral Sciences at Northwestern University. “There’s absolutely no governance…because it’s not regulated by the state or by the [U.S.] Department of Education.”

Why grief counseling has boomed

With COVID-19 deaths well past 1 million in the U.S. and 6.5 million worldwide, the demand for grief counseling has exploded. Every death has a profound impact on approximately nine people, according to the University of Cambridge. Two years into the pandemic, a report showed that the percentage of Americans suffering from anxiety and depression has tripled, and drug overdoses and alcohol-related liver disease have risen as well. For some, the experience of bereavement can morph into something much deeper – an unshakable sadness that psychologists call prolonged grief disorder and is often misdiagnosed as depression.

Grief counseling is also in demand in the criminal justice system: Grief counselors have worked with bereaved prison inmates and are sought after for families enmeshed in substance use disorder. Inspired by work from restorative justice advocates, courts in numerous states from California to Alabama have ordered grief counseling as part of mandated treatment  for people in criminal diversion programs – all changes that experts view as bellwethers of a less punitive future.

However, there’s a tremendous shortage of trained and licensed mental health professionals to meet the demand for therapy, creating a market opportunity for people even without clinical training and licenses to work as grief therapists. To do that, they need something that attests to their knowledge –  certification.

And that’s where things get confusing. Being certified in grief counseling doesn’t mean someone is a licensed counselor, but to the general public, it seems like the same thing: A certification can be easily mistaken for a professional license.

Colleges and universities provide education and training in disciplines such as social work, counseling or psychology, culminating in an advanced degree. State boards administer exams and issue licenses to these professionals, giving them the right to practice. Certifications are legal, but they are neither a degree nor a license.

Adding to the confusion, many clinical professionals do seek additional certifications for specialized training in narrower areas, ranging from counseling for pet loss to trainings in preventing and treating patients for adverse childhood experiences (ACEs) and toxic stress. Even for mental health professionals, specialization in working with bereaved people is an important need, because few have been trained in this work through their degree programs. 

“You can go through the entire graduate curriculum in psychology and social work, even, astonishingly, in chaplaincy or palliative care and nursing, and never hear the word grief,” said Robert A. Neimeyer, a psychology professor at the University of Memphis who also directs the Portland Institute for Loss and Transition, which offers training and certification in grief therapy.

Most professionals have to take continuing education (CE) credits to maintain their licenses and certifications. Taking CE courses is critical, said Gerald Koocher, an attending psychologist at Boston Children’s Hospital and  senior lecturer in psychiatry at Harvard Medical School. “Within about seven or eight years after you graduate…half of what you learned is obsolete,” he said.

And while state licensing boards appear to do an adequate job of screening CE credits, certification providers may not. Perhaps the biggest reason: The terms “Continuing Education Credit” or “Continuing Education Unit” are not legally protected – meaning no organized body controls them – and are thus available to any education provider that wants to issue them. And if patients looking at their grief counselors’ certificates on the wall cannot tell the difference, what then?

In 2020, Washburn of Northwestern University co-authored a study on specialty mental health certifications with two colleagues, including Gerald Rosen, a psychologist and clinical professor emeritus in the department of psychology at the University of Washington in Seattle  They gave a “Certified Clinical Trauma Professional” certification test and materials to a 14-year-old, the daughter of an author’s friend. She answered all 50 questions correctly thanks to matching sentences in the study guide. 

In a caustic abstract, the authors wrote: “We demonstrate that an 8th grader with no prior mental health education or training can pass a test intended to assess expert levels of knowledge obtained from a workshop.” 

Rosen, in fact, remembers when qualifications were even more lenient. “In the 1970s, you didn’t even need to have a high school degree,” he said. “It was unbelievable. Anyone could call themselves a counselor.”

Credentialing: Not the cat’s meow

But the three professors weren’t the first ones to go after the certification industry.

Two decades ago, Steve Eichel, a psychologist known for his research on destructive cults and mind control, grew increasingly exasperated and dubious of credentials in his profession. He decided to credential his cat – yes, you read that right – to showcase the lack of checks and balances in the industry. “This was a surprisingly easy thing to do,” he wrote in an article published on his website.

Eichel was compelled to explain himself after a reporter wrote to him in 2002 asking how to reach Dr. Zoe D. Katze. “The cat is out of the bag,” he wrote. “Dr. Zoe D. Katze, Ph.D., C.Ht. is a cat. In fact, she is my cat. Those familiar with basic German have probably already enjoyed a laugh. ‘Zoe Die Katze’ literally translates to ‘Zoe the cat.’”

He reported that his cat’s credentials looked impressive and that she had been certified by three major hypnotherapy associations, “having met their ‘strict training requirements’ and having had her background thoroughly reviewed.”

The psychologist was driven to certify his cat, he wrote, after hearing too many prospective clients complain that they had found someone else “with all these certifications and diplomas and he/she charges half of what you psychologists charge.” His breaking point came when he discovered another colleague online who had a PhD from “a notorious diploma mill” and listed “a veritable alphabet soup” of certifications and diplomas after his name. 

After Eichel added Zoe as an “authorized user” on his credit card, everything fell into place. “In the nefarious world of quasi-credentialing and diploma scams, money talks. Or at least it meows,” he wrote. After Dr. Katze received one credential, other associations that had reciprocity agreements awarded more. “Not bad for a cat that’s not even a purebred,” he wrote.

Eichel noted that a banker asked for Zoe’s social security number, but “cheerfully relented when I told him it would take me some time to search for it.” The certification industry isn’t responsible for the banker’s lack of rigor, of course, but Eichel’s point still holds: It’s far too easy to pass these tests and get certified.

Eichel turned more serious when he discussed the meaning of his cat’s credentials. He dismissed the idea of stricter laws on credentialing, which he thinks would do more harm than good, since what constitutes “good” therapy is hard to define. However, he called on readers to help monitor themselves, “to examine our own motivations for obtaining credentials (both legitimate and dubious), to police ourselves and our own professions, and to do our best to educate the public.” 

The tale of Dr. Zoe D. Katze, Ph.D., C.Ht, made a lasting impression on the experts I spoke with. Twenty years later, not once did a source fail to mention the story to me. Because 20 years later, it seems like almost no progress has been made.

Online grief courses abound

For consumers, certifications are supposed to signify a set of minimum competencies. But in a competitive market, credentials have also become an avenue to distinguish yourself. Quite naturally, some professionals are attracted by less expensive and less time-consuming courses that offer a quick way to get visibility or access to a network of prospective clients.

I looked into six grief recovery and/or counseling certification courses for this story. Four of them – offered by the Grief Recovery Institute, the Global Grief Institute, PESI and Udemy – are among the first to come up in an internet search for grief therapy certification. Two others are offered by professional associations. I found that the rigor, the work required and the education prerequisites to seek certification varied widely.

The Global Grief Institute, for example, which urges people to “get your piece of the $100 Billion dollar Coaching industry,” doesn’t require a college degree; in fact, it appears to discourage participants from getting one (see Facebook posting, left). It’s able to certify mental health newbies like myself because it markets its courses under the term “coach” – and coach isn’t a protected job title in the U.S.; neither is “professional” or “specialist.” Protected job titles such as psychologist or social worker require completion of specific training courses, usually a graduate degree in psychology or related fields. 

Interestingly, the designation “counselor” isn’t protected equally across the country, either: Most states require counselors to obtain a license to practice. But certain states allow unlicensed counselors to practice if they don’t advertise themselves as licensed.  

Since laws differ from state to state, the landscape is difficult to navigate for patients as well as professionals seeking to get certified. Of the four commercial certification outfits, one is being sued for deceptive pricing and has racked up hundreds of outraged consumer complaints. (See accompanying summary of other grief counseling training organizations and of two rigorous professional certification providers.)

APA stamp of approval?

The credentialed cat experiment – and most recently, my own experience – underscore that certification for grief practitioners needs improvement. The mental health field has always strived to become as credible and respected as regular health care, and the concept of certifications and credentials, in fact, comes from medicine. 

You can ask a surgeon for his track records of successful operations, or a gastroenterologist about his rate of successful colonoscopies. But how do you apply this level of rigor to a profession often characterized by subjectivity? How do you make sure counselors in general are skilled and reputable? 

Certification attempts to address these questions, and not all the training is questionable, of course. The American Board of Professional Psychology (ABPP), for example, issues well-regarded certifications that involve extensive work and prerequisites. 

Without an oversight agency, many look to the American Psychological Association as a gatekeeper. The APA has a section of its website called “Approved Sponsors of Continuing Education” – CE providers the association recognizes as trustworthy and professional. Udemy is not on it. Neither are the Global Grief Institute or the Grief Recovery Institute. But PESI is, and you can click through to its listing of classes and webinars.

APA’s list is theoretically only relevant for psychologists. However, the APA does approve sponsors of CE courses created by laypeople if they meet its lengthy standards and criteria for CE content. The APA’s seal is widely seen as a stamp of approval – and PESI, for example, advertises the APA seal on its own website.

Is there a gatekeeper in the house?

Perhaps it’s not necessary to have a professional background to be an effective grief coach or peer counselor.  Many people who want to enter the field mention that they have experienced grievous losses of their own that motivate them to help other people in their suffering.

There is also a growing movement of people with lived experience with mental illness and recovery who want to use their experiences to help others. Peer support specialists are even eligible to be paid for their work with funds from the federal Medicaid system – if they have completed training and certification programs sanctioned by each state. 

So what’s the harm in the lack of strict national standards in the grief counseling industry? To begin with, peers and others who want to work with people who are grieving deserve the best possible training. At present,  professionals and non-professionals alike may pay for continuing education that isn’t optimal or even scientifically valid.  More importantly, patients dealing with profound grief could find themselves working with people who have no real training – beyond an easily passed on-line course.

Jolene Formaini, a retired nurse who ran a bereavement program for a Pennsylvania hospice, recalls the story of a mother grieving over the death of her college-aged daughter. She sought help from a woman who billed herself as a “certified”  grief counselor but had no clinical training. When Mother’s Day came, her counselor sent her flowers and a card signed with her daughter’s name. 

“She was crushed,” says Formaini. For this mother, it felt like going back to square one in her grieving process. “There is no course in the world that would say that’s okay,” says Formaini. She believes marketing oneself as a certified grief counselor despite not completing any appropriate program is “dangerous.”

Licenses and board certifications, at least, give patients an avenue to complain. Psychologists certified by the ABPP can lose their certification if sanctioned by the licensing board or even have their license revoked. An unlicensed counselor, therapist, coach or professional who’s been handed bogus credentials isn’t held to a set of minimum standards.

“If somebody just calls themselves a grief counselor and they give you bad advice, there’s no profession for you to appeal to. No one regulates their behavior,” said Gregory Neimeyer, the APA’s associate executive director for professional development and continuing education. 

And gatekeepers are hard to find: Counseling and psychology have become increasingly specialized and universities don’t have the resources to provide hyper-specific training. States don’t want to halt innovation since they can’t keep up in creating specialized licenses for each new, potentially effective therapy. National boards and associations are shackled by lack of time and resources.

That means people needing help with their grief may face unexpected hazards, experts say.

“We want to raise the awareness of the public that you should be careful when somebody says they’re certified, to make sure that they’re certified by something that’s bona fide within the profession,” said Washburn.

Kathy Richardson, a licensed counselor and assistant professor at Rosemont College, advises patients to ask grief practitioners about their educational background and training before committing: “Where were they trained? What’s their educational background? Did they just get a Black Friday deal or 50% off a workshop and they went ‘now I’m a world renowned grief specialist?’”

Down the rabbit hole

Richardson’s words were ringing in my ears as I opened a new tab. A quick internet search on “How to get a certification in grief counseling” displayed an attractive offering: a certification with “a minimum of 6 hours of continuing education in specific grief counseling topics.” I clicked on the link. It led me to Evergreen Certifications, a private company that provides certifications in behavioral health, healthcare, speech-language, physical therapy, occupational therapy and education. I emailed the company, identified myself as a journalist, requested an interview and got an automated acknowledgment – but no further reply or interview opportunity.

I continued my research. Of the four grief recovery courses approved by Evergreen, two were available through PESI, a leader in healthcare continuing education. PESI markets mostly to health care professionals, but it also allows non-professionals (in categories such as ‘parent/guardian’) to take various courses.

Unlike other continuing education providers, PESI doesn’t give out certifications. It provides the training and credits required to qualify for certifications from Evergreen and others. I thought PESI and Evergreen were separate entities, but court and tax records show that PESI actually owns Evergreen, which was founded in 2017. To my knowledge, this hasn’t been advertised by either organization. (For more on PESI’s internal financial workings, see here).

“We don’t hide the fact that [Evergreen is] part of PESI, but we don’t feel the need to also advertise it because it does sit as its own entity,” PESI’s deputy director Michael Olson said in an interview. “Evergreen standards will honor education from any provider that meets the standards.” The cost for PESI’s Grief Treatment Certification Training course was $219.99 for a $439.97 value, according to its website. 

I wasn’t especially lucky to get this deal since the online course has almost always been on sale. Since enrolling in PESI’s certification program a year ago, I have received 808 promotional emails for various courses, seminars and workshops – more than two a day on average. Anything is fertile ground for massive discounts: summer sales, Memorial Day sales, spring sales, St. Patrick’s Day sales, and Valentine’s Day sales.

The completion of PESI’s Grief Treatment Certification Training relied on self-monitored attendance records and a multiple-choice quiz. This was the test I was able to pass on that Sunday afternoon of bread-baking, with a certificate of completion available to download soon afterward.

But could I finally advertise myself as a certified grief and bereavement practitioner? This was still unclear. The documents I received from PESI and Udemy were indeed certificates, but they did not mention “certification.” This distinction is confusing but critical. 

My certificates – also called certificates of successful completion – are proof that I attended and completed a course. That paves the way for students to apply for certification, which allows you to add a multitude of letters after your name: CGP for instance (Certified Grief Professional). In fact, several of my fellow Udemy classmates had already posted various diploma-like certificates to the “Licenses and Certifications” section of their LinkedIn profiles. Some of them were mental health professionals; others were not.

I noticed a similar trend scrolling through the forum page of the PESI course I took. The drop-down list of professions upon signing up included non-professional occupations such as “teacher,” “school administration,” “physical therapist,” “audiologist,” “massage therapist,” “coder,” “attorney,” and even “HR professional.”

I was uncertain how to identify myself since the multiple-choice boxes included no category for journalist, so I initially checked the first one: “Counselor,” then changed to “parent/guardian” since that was the closest I could find to my situation. 

When  I called  Evergreen to find out why I had never been issued a certification,  a customer service representative explained that I had to be a licensed mental health professional.  That’s not what PESI’s director Michael Olson told me, however.  He said in an interview that the certification would be different than a mental health professional’s, but that non-professionals are eligible to get certified if they pass the test.

Either way, I had another option now. The Grief and Bereavement Counselling course offered by Udemy is accredited by the International Association of Therapists (IAOTH), an organization based in the U.K. I promptly signed up for a membership, adding both my Udemy certificate and the PESI one to the qualifications section. 
And today – voilà – here I am: listed on the association’s website and ostensibly available for hire.

The post On the internet, anyone can be a grief therapist now appeared first on Coda Story.

“You do not know the plight of the poor,” the girl told reporters, referring to the high priests and seers who argue that eggs violate the vegetarianism supposedly intrinsic to the practice of Hinduism. “We need eggs… who are you to tell us [what to eat]?”

In July, the howls of indignation from upper caste communities and even legislators notwithstanding, Karnataka’s department of education announced that it would provide eggs in all districts on 46 days of the 2022-23 school year.

Only half of India’s 28 states and eight union territories provide eggs as part of the midday meal scheme. And in those states that do provide eggs, the frequency ranges from daily to once a week to even once a month. These free school lunches feed well over 100 million of the poorest children in the country, ensuring they get at least one balanced, nutritious meal every day. The scheme began as an incentive for poor parents to send their children to school, if only to guarantee lunch, but is now a widely acknowledged bulwark against the persistent malnutrition that afflicts children in India.

Rates of stunting and severe stunting remain stubbornly high in India, despite decades of economic growth. The children most affected are those under five years old, but even among school-going children over 30% are underweight and undernourished.

Covid has exacerbated concerns, with government figures between 2020 and 2021 showing a sharp rise in the number of acutely malnourished children, even in prosperous states such as Maharashtra and Gujarat. According to this year’s Global Hunger Index, India ranks 107 out of 121 countries, faring worse than poorer neighbors such as Bangladesh.

Nutrient-rich eggs, packed with protein, would substantially improve India’s nutritional outcomes. In Karnataka, a study commissioned by the government showed that 13-year-old to 14-year-old girls who had access to eggs as part of a midday meal program gained 71% more weight than girls of the same age and socioeconomic background who did not get eggs.

Still, Karnataka’s apparently sensible decision to make eggs available to schoolchildren who wanted them met with disapproval in influential circles. Tejaswini Ananth Kumar, the vice president of Karnataka’s BJP chapter and widow of a former minister in the Narendra Modi government, tweeted that eggs were “not the only source of nutrition.” She added that the decision to serve eggs in school might be considered “exclusionary to many students who are vegetarians.”

The BJP is the political party in government at state-level in Karnataka and federally, with Modi arguably the most popular and powerful prime minister in decades. Its prevailing ideology is Hindutva, a Hindu supremacist movement that has disdain for India’s constitutional secularism, believing India ought to be a Hindu nation — in the same way that countries like Saudi Arabia or Pakistan are Islamic nations.

Karnataka is now one of very few BJP-ruled states that are offering eggs to schoolchildren. States such as Gujarat, where Modi comes from and where he was chief minister between 2001 and 2014 before becoming prime minister for the whole country, don’t offer eggs as part of school lunch even though large numbers of children suffer from chronic malnutrition.   

Sylvia Karpagam, a doctor and public health researcher based in Bangalore, Karnataka’s capital city, told me that the “myth about India being vegetarian is strongly pushed by those with an ideological agenda. It is far from the truth. And it is reinforced by the mostly dominant caste, English-speaking, Indian-origin diaspora in the West. It feeds the stereotype that India is a largely mystical, yoga-practicing, peace-loving country.” Karpagam, who has written extensively on India’s nutrition problems and its links to caste and class inequalities, noted that this dominant class influence “manifests itself in the kind of decisions about food that are being made in the country.”

A 2020 paper published by experts whose findings were intended to help shape India’s new national education policy claimed that “animal-based foods interfere with hormonal functions in humans.” Just a few lines before this conclusion, the authors noted that “[g]iven the small body frame of Indians, any extra energy provided through cholesterol by regular consumption of egg and meat leads to lifestyle disorders.”

Widely criticized on social media, the paper was deemed further proof of an unscientific, state-sanctioned effort to portray vegetarianism as somehow more Indian than the meat-eating commonly associated with lower caste Hindus and Muslims. In its ugliest manifestation, this endorsement of vegetarianism spills out of conference rooms and academic position papers and onto the streets in the form of lynchings of mostly Muslim cattle traders.

According to Human Rights Watch, between 2015 and 2018, 44 Indians, including 36 Muslims, have been killed by cow vigilantes. In another analysis, 97% of attacks by self-styled “gau rakshaks,” literally “the providers of protection and security to cows,” between 2010 and 2017 occurred since the ascension of Modi to power in Delhi. As recently as April 2022, there were reports of a man dying after he and two other men were severely beaten by vigilantes who suspected the men of slaughtering cows.

“There is a contempt for meat,” Sylvia Karpagam, the doctor from Bangalore, told me. “And for meat eaters who are viewed and projected as more violent, as sexually aggressive, lustful and criminal.” She stressed that these behavioral associations were linked to casteist notions of “purity and pollution.” Brahmins, she said, flaunted vegetarianism as pure and meat-eating as impure. “This idea is fed early to children,” she explained. “Meat-eaters often experience shame for their food choices and tend to hide what they eat in their homes.”

In recent years, this cultural shaming has been abetted and encouraged by the government. Four years ago, India’s health ministry tweeted an image explicitly associating extra weight and lack of health with the eating of meat and eggs. A backlash led to the ministry deleting the tweet, but the mindset, Karpagam insists, remains.

Vegetarianism and veganism have become increasingly popular in the West, where these dietary choices are seen as not just beneficial for health reasons but also for the environment. But, Karpagam argues, “the vegetarianism that is being pushed here, in our context, is top-down, caste and class-based. It is totally unscientific. For example, if a woman goes to a hospital with anemia, she will be given iron tablets and told to eat vegetables. But it is unlikely she will be told that liver and red meats are good for her. This is vegetarianism by erasure. The government is not endorsing vegetarianism for ethical reasons or scientific ones. In fact, our knowledge of healthy vegetarianism is also poor.”

According to Karpagam, “enforced vegetarianism” harms the poor. “When the poor eat a cereal-heavy and nutrient-deficient diet they are more likely to suffer from malnutrition. Children are more likely to have stunting and to be undernourished,” she said. Yet most national health surveys show that up to 70% of Indians are meat-eating, that for poor people food such as the meat from water buffaloes (classified as beef by the U.S. Department of Agriculture, making India ironically one of the world’s largest exporters of beef alongside the likes of Brazil and Australia) are a major part of their diets.

Dipa Sinha, an economics professor at Delhi’s Ambedkar University, said that “if meat and eggs were incorporated into public food programs then obviously supplementary nutrition would be better and that could have an effect on our malnutrition crisis.” But, she conceded, “the resistance to such a move comes largely from the upper castes. Vegetarianism is an upper caste idea and it is the dominant castes that exert the most influence on public programs.” These programs mostly help those whose diets have traditionally included meat and eggs and who are ill-served by the growing distaste with which the government views people who do not follow vegetarian diets.

The Right to Food Campaign describes itself as an “informal network of organizations and individuals” who recognize that “everyone has a fundamental right to be free from hunger and undernutrition.” Swati Narayan, a scholar and activist who works with the Campaign, told me that while India “has achieved scale with the universalization of school meals, we’ve still not achieved nutrition, as is evident in the government data.” Eggs, she pointed out, “are nutrient dense, so why not achieve adequate nutrition by adding eggs to school meals?”

As inflation bites, poor people in India often go without, eating flatbread and pickles as a meal, or going without basic vegetables. In such circumstances, school midday meals are a lifeline.

It seems wholly unreasonable that a simple and inexpensive fix such as adding a single egg to free lunches for poverty-stricken children must meet such virulent cultural opposition that it falls upon straight-talking schoolgirls to show community leaders, priests and government ministers the error of their ways.

The post Eggs in school lunches can fix India’s malnutrition crisis appeared first on Coda Story.

Alberta was the site of many of the mass protests over the summer: “Freedom Convoys” stretched over parts of southern Alberta along the border with the United States, blockaded cross-border commerce and occupied the streets of Canada’s capital, Ottawa. Hundreds of truckers traveled from across the country to protest vaccine mandates in front of the parliament building. To many in Canada, the protests highlighted the cultural and ideological differences between the western prairie provinces and the more populated, urban provinces in Canada’s east. 

The Freedom Convoy that shut down the border with the U.S. was full of people from Alberta. The blockades lasted for several weeks as the anti-government protests challenged vaccine mandates and other Covid safety restrictions. Those who joined the demonstrations frequently slipped into extremist far-right narratives and promoted conspiracy theories. 

Conspiracy theorists have latched on to spreading scientific misinformation. Doubts about vaccine efficacy are commonly circulated through social media, and potential Covid cures like ivermectin, which scientific research does not support, are promoted. Agence France-Presse’s fact-checking bureau found a fire hose of false claims online suggesting that more vaccinated people were hospitalized in Canada than those who were unvaccinated — a claim unsupported by data from Health Canada.

In this still-simmering political cauldron, the new premier of Alberta’s government announced that people unvaccinated against Covid confront the most discrimination in the state.

Shortly after taking office last month, Danielle Smith declared at her first press conference that unvaccinated people are the state’s most vulnerable, having already come up with a plan to amend the Alberta Human Rights Act to codify protections for those who allegedly have been discriminated against for being unvaccinated against Covid. (She ultimately backtracked when leaders from groups experiencing discrimination protested her remarks.)

The new premier, the equivalent of a state governor, has previously come under fire for sharing unproven claims about the virus on Twitter during the early days of the pandemic. Smith became the leader of the Wildrose party in 2009. The party is unique to Alberta with a platform that has sought to revamp healthcare delivery with more privatized options and reign in provincial spending, hoping to appeal to populist voters. Her previous position as a radio talk show host allowed her to broadcast views that promoted pseudoscience and cures for Covid frequently touted by former President Donald Trump.

Overall, Canada consistently ranks as having one of the most highly educated populations in the world. Nationally, support for vaccines is high. But while 88% of the Canadian population has received at least one dose, Alberta has the lowest number of doses administered per 100,000 people to date compared to the other prairie provinces.

Alberta is well known for its “western alienation” — a kind of jilted, strained relationship with other parts of Canada. A feeling of limited representation in the federal government and an economic reliance on natural resources has yielded a sense of apartness from the rest of Canada.

This apartness is rooted in Alberta’s history. In the 19th century, many Americans heading west settled in the vast Canadian province, bringing with them a strident individualism and deeply entrenched political populism, rejecting government reach into private lives. The number of Americans arriving in Alberta, mainly from the rural American Midwest, quickly outpaced British settlers and even native-born Canadians.

Whether due to the stress of the pandemic, opportunism from populist politicians or the forces still at work from its settler colonial history, Alberta’s apartness now may be intensifying. 

Doctors in Alberta have warned that it is becoming more common for patients to refuse blood transfusions from Covid-vaccinated donors, and they worry that this could develop into the next form of widespread protest. Timothy Caulfield, a professor in the Faculty of Law and School of Public Health at the University of Alberta, believes this trend is driven by misinformation, which is causing patients to refuse to consent to blood transfusions if the blood comes from a donor who had received the Covid vaccine. 

Damaging myths surrounding blood purity cost countless human lives during the 20th century, and centering Covid vaccine opposition around the transfusion of blood would be a remarkable new chapter for the vaccine hesitancy movement. 

In the 20th century, a fear of contaminated blood was a vehicle for anti-Black racism. The false notion that drops of blood could contain racial purity was a widespread belief in the U.S. and swaths of Europe. The Canadian Red Cross oversaw the blood donation process for five decades, from the mid-1940s to the late 1990s. The program, originating in wartime, had a history of racially segregating blood for American and British white soldiers. 

Fear of blood contamination has historically impacted marginalized communities. Earlier this year, after three decades, Canada removed the ban on donated blood from men who have sex with men. The ban came out of longstanding concerns about HIV transmission in the donated blood supply following the HIV/AIDS crisis of the 1980s. It was slowly dialed back as testing requirements became more comprehensive and donation supply demands increased.

Dr. Nathan Lachowsky, a public health professor at the University of Victoria, cited “a variety of screening questions that have excluded specific groups from blood donation, including men who have sex with men, certain Black African communities, people who inject drugs, and sex workers.” He believes that while the screening questions have evolved, “rarely has there been acknowledgment or apology for ways in which the blood system has propagated stigma and discrimination against these groups.”

The general public has questioned the integrity of Canada’s blood donation system in the past. A scandal in the 1990s led to thousands acquiring HIV and hepatitis C through blood transfusions, which prompted investigations into the system. Subsequently, a nonprofit health organization, Canadian Blood Services, took over the processing of blood donations with stringent health protocols. 

“This system failure led to a national inquiry and the current blood donation system we have today in Canada,” said Dr. Lachowsky, which created a sense of distrust. 

Nevertheless, Canada’s public healthcare system, which shielded the country from outsized effects of contracting Covid and minimized vaccine hesitancy, should also minimize an outbreak of fear over “contaminated” vaccinated blood, said Dr. Davinder Sidhu, a transfusion specialist physician from the University of Calgary.

“Based on the Canadian universal healthcare model, there is just a presumption [that] the system will be here to take care of people if they get sick. The fear of significant financial pressures and costs don’t exist like in the U.S. medical healthcare model. And so, people may be more cavalier with their health,” said Dr. Sidhu. 

According to Dr. Sidhu, the requests for directed donations from unvaccinated donor groups is particularly surprising because Canada is known for its safe blood system. “Directed donations are more common in parts of the world where the blood supply is less well tested or deemed dangerous due to other circulating transfusion-transmitted diseases,” he said.

A spokesperson for the Canadian Blood Services said in a statement: “Our ultimate priority is the health of the patient. Health Canada has not recommended or imposed any restriction on the use of the approved Covid-19 vaccines and blood donation. This is because the blood of donors who have received non-live vaccines does not pose a risk to patients who receive a blood transfusion.”

The post Covid misinformation ignites a battle over blood in a Canadian province appeared first on Coda Story.

Dr. Babu, an ophthalmologist by training, was horrified. “How can they treat double vision with some drops!!” he exclaimed incredulously on Twitter. Retinitis pigmentosa, a degenerative eye disease, has no known cure, and cataracts cannot be treated without surgery, he told me over the phone from his home in Kannur, in the south Indian state of Kerala.

“There are no clear cut studies to substantiate that advertisement,” he said, expressing concern that patients might opt for the eye drops instead of clinically proven treatments or surgeries. “People will be denied proper treatment, which will lead to blindness.”

After spotting several similar adverts from Patanjali claiming that their Ayurvedic medicines could cure, among other things, diabetes, blood pressure issues and goiter, Dr. Babu filed a legal complaint. Last month, the Central Consumer Protection Authority issued a notice to the company for misleading advertising.

Endorsing unscientific cures

In April, at a convention center in Gandhinagar, Gujarat, Indian prime minister Narendra Modi sat next to the World Health Organization director general Dr. Tedros Adhanom Ghebreyesus as they celebrated the growing global impact of traditional Indian medicine.

Together they inaugurated the WHO Global Center for Traditional Medicine in Jamnagar, Gujarat — built with a $250 million investment from the Indian government as a standard bearer for the shared vision with WHO that “harnessing the potential of traditional medicine would be a game changer for health when founded on evidence, innovation and sustainability.” According to the WHO, over “40% of pharmaceutical formulations are based on natural products and landmark drugs, including aspirin and artemisinin, originated from traditional medicine,” with an estimated 88% of countries using traditional therapies, such as herbal medicines, acupuncture, yoga, and others. 

For Modi, the promotion of Indian traditional medicine is essential to both his economic and ideological agenda. The export of Indian-made herbal medicines is worth several hundred billion dollars already and the industry is growing at nearly 9% each year, with demand exploding during the Covid-19 pandemic as people sought natural remedies and “immunity boosters” for the virus.

On October 23, at an event to mark “Ayurveda Day,” the minister of state for Ayush (the traditional medicines ministry created by the Modi government in 2014 when he became prime minister) claimed that Ayurveda was now accepted as a traditional system of medicine in 30 countries and that Ayush medicines were being exported to 100 countries.

Ayurveda dates back some 4,000 years and its foundational texts emphasize ideas of balance and harmony. While the economic reasons to promote Ayurveda, like yoga, as an Indian gift to the world are apparent, it also fits with the Modi government’s Hindu supremacist agenda and with feeding a sense of grievance that India’s colonial history has meant Indian knowledge systems are frequently dismissed as inferior to Western science.

The second sentence in the Wikipedia entry for Ayurveda declares that the “theory and practice of Ayurveda is pseudoscientific.” This so incensed the Ayurvedic Medicine Manufacturers Organization of India that it complained to the Supreme Court that the entry was defamatory, prompting the bench, as it dismissed the case on October 21, to observe acerbically that “you can edit the Wikipedia article.”

Yet allegations of pseudoscience and low testing and quality control standards continue to dog Ayush medicines. Patanjali is far from the only company peddling unproven medical cures. And the nationalist agenda to promote traditional Indian medicines has prompted a slew of endorsements from prominent religious or political figures for treatments which have never been scientifically proven to work.

For instance, Ashwini Choubey, ex-Minister of State for Health, extolled the use of cow urine as a cure for cancer. The cow is a sacred animal in Hinduism, and cow urine has been used in Ayurvedic treatments for centuries. Another Union Minister of State, Shripad Naik, claimed that Ayurvedic treatments “have already reached a stage where just like chemotherapy, we can treat cancer, but without the side effects.” There is no reliable evidence to support the use of any Ayurvedic medicine as a treatment for cancer.

Choubey and Naik are among a growing number of voices on the Hindu right pushing for the integration of traditional Indian therapies with modern medicine. The Ministry of Ayush — Ayurveda, yoga, unani, siddha and homeopathy — was set up to oversee and promote traditional Indian medicine. But the ministry has also helped promote medical cures which are not backed by evidence. In an advisory on preventative measures against Covid-19, for instance, the ministry suggested the use of Arsenicum album 30C, a homeopathic drug, as a prophylactic against the virus, alongside other measures such as inserting sesame oil in each nostril every morning.

Not only is there no evidence that these treatments can help to prevent Covid-19, but homeopathy as a whole has been widely debunked.

Critics are keen to emphasize that while not all alternative treatments are ineffective — indeed, many modern medicines drew originally on traditional medicinal knowledge — all treatments should undergo rigorous clinical trials before being promoted in the public sphere.

“It doesn’t matter what form of therapy you suggest is working. It has to be grounded in evidence,” said Anant Bhan, a researcher in bioethics and health policy. “If you can’t show that, then such claims should not be made, because then you’re potentially putting human lives at risk.”

A violation of the right to life?

Misinformation surrounding alternative therapies in India has already proven deadly. One study from 2019 published in the Journal of Clinical and Translational Hepatology, which compared patients with alcoholic hepatitis who were taking alternative medicines with a control group who received standard care, found that the patients using alternative medicines had significantly higher short-term mortality rates; only 18% survived to 6 months, compared to 52% of patients receiving standard care.

Concerns that the attempt to integrate traditional medicine with modern science may negatively impact health outcomes have also been voiced by the Association of Medical Consultants (AMC), a group of doctors in Mumbai. Earlier this year, they filed a petition against two new bills which would allow Ayurvedic doctors to practice various types of surgery. The government claims the scheme will address the country’s chronic shortage of doctors, and has set up a six-month-long bridge course which aims to train the Ayurvedic practitioners.

But the AMC contested that the new bills constitute a “violation of the right to life” as laid out by the Constitution of India. “The government steps to try and integrate the Indian system of medicine with the contemporary modern system of medicine is fraught with danger,” said Dr. Sudhir Naik, an obstetrician and past president of the AMC who was involved in filing the petition.

“We understand the government’s limitations as far as the workforce is concerned. But there are no shortcuts,” he said. “You can’t give them six months training and say, okay, now go ahead, go into the field and do these procedures. That’s not practical, that’s highly dangerous. You can’t use our rural population as guinea pigs.”

Questions remain, too, about the use of essential anesthetic drugs and post-surgery antibiotics, which fall outside the scope of Ayurvedic practice.

“If there is a claim that an Ayurvedic surgeon, for example, can do surgeries of a particular kind, then it has to be based on some kind of comparative evidence generation,” said Bhan. “Ultimately, it comes down to public health and to patient safety.”

Government-led misinformation

India’s first prime minister, Jawaharlal Nehru, was a strong proponent of science, initiating reforms to promote higher education and inaugurating several new scientific research and educational institutes. Today, India has a huge tech industry, its own space program, and is the world’s largest exporter of pharmaceuticals — as well as supplying over half of the vaccines produced worldwide.

The rise of pseudoscience seems to signal a shift however in the priorities of the current leadership, rejecting scientific rigor in pursuit instead of a Hindu nationalist ideology.

Sumaiya Shaikh, a researcher studying the neurobiological underpinnings of violent extremism, has spent years advocating for evidence-based medicine and critiquing misinformation in public health policies in India. There has been a “definite increase” in unscientific claims in recent years, she said — including in the promotion of alternative medicines.

“The government has used it as a strategy to push out untested remedies,” she said. From a neuroscience perspective, misinformation which backs up a person’s existing belief system is very effective because “it’s less taxing for your brain than to actually read the evidence or fact check,” she said. “The way that it captures your brain is often highly emotive.”

This means that not only do adverts like Patanjali’s appeal to people on an ideological basis — the conglomerate’s brand ambassador, Baba Ramdev, is a popular Hindu spiritual leader and vocal supporter of the BJP — but they also bank on simplicity. 

People tend to be drawn to the quick fixes, said Shaikh, “where there are bigger promises made. For example, a person who’s an expert in, say, diabetes is never going to claim that we’re going to completely rid you of diabetes — but somebody who is an expert in homeopathy will make that promise to you.” The result, she said, is that many end up opting for therapies which have little evidence of efficacy.

Dr. Cyriac Abby Philips is a liver specialist who actively campaigns against what he sees as a dangerous lack of regulation of alternative medicines. He believes that the current leadership is unwilling to correct misinformation, because it would directly contradict some of the core tenets of Hinduism.

For example, Tinospora cordifolia, commonly known as Giloy, is a shrub native to India which appears in ancient Hindu texts, and has been used by Ayurvedic practitioners to treat various medical ailments for centuries. Multiple peer-reviewed studies have linked its use to liver damage, however. The results of some of these studies have been strongly disputed by the Ministry of Ayush, which called one paper and the media reports which followed its publication “misleading” and questioned whether the active ingredient has been mistaken for a “similar looking herb.” The ministry did not respond to my requests for comment on this article.

Dr. Philips, who has also published a paper linking Giloy usage to liver damage, believes that the ministry’s strong rebuttal of the research is due to the “cultural, traditional and political values” attached to Ayurvedic treatments such as Giloy. “It’s not so simple saying that this Ayurvedic drug or this Ayurvedic practice is wrong. if you say that, it’s like you are hitting at the foundation of India,” said Philips.

Capitalizing on fear

The promotion of alternative treatments with limited evidence of efficacy increased drastically with the arrival of Covid-19 in India in early 2020. Fear of the virus, combined with a lack of consensus from the scientific community on how it was spread, resulted in a marked increase in misinformation.

“There was this sense of urgency of getting something which works. So when you get any source of information which seems credible, then of course, you would jump at it,” said Bhan.

At the peak of the pandemic in June 2020, Patanjali launched Coronil, advertising it as the “first evidence-based medicine for Covid-19” at an event also attended by India’s then Minister of Health, Harsh Vardhan. After a backlash and widespread doubt over the veracity of the data, Coronil was later downgraded to an “immunity booster,” a claim which was endorsed by the Ministry of Ayush. A lab test carried out by the University of Birmingham found that the pills offered no protection against the virus.

Despite this, Patanjali sold 2.5 million Coronil kits in the four months since its launch, grossing $30 million, according to the company. Sales of some other “immunity boosters” manufactured by Ayurvedic companies rose by as much as 700% during the first few months of the pandemic.

“There is cultural supremacy that the medicines bring, but at the same time, there’s a huge financial gain here,” said Shaikh. “The alternative health industry knows that they’re making a large amount of money out of this. And of course, the government knows that too — the government is equally to blame here, in not containing the misinformation, in promoting it from their own channels.”

A lack of regulation

While alternative medicine manufacturers in India must comply with the same Good Manufacturing Practices (GMP) as pharmaceutical companies under the Drugs and Cosmetics Act 1940, factory inspections are conducted by different departments for each school of medicine. As such, the production of alternative medicines is often subject to less stringent regulations, said Akash Sathyanandan, a lawyer at the High Court of Kerala, with “different yardsticks for different schools of medicine.”

With public scrutiny lower than in the pharmaceutical industry, Sathyanandan said that substandard manufacturing processes often go unnoticed and underreported. “There is a lot of data that is below sea level,” he said.

Many alternative formulations have been found to contain contaminants, some of which are harmful to human health. Several studies conducted in the U.S. for example, found that a significant percentage of imported Ayurvedic supplements contained lead and other heavy metals, at quantities which would result in intake above regulatory standards if consumed as recommended by manufacturers.

Dr. Cyriac Philips has first-hand experience of the danger this poses. At his clinic in Kerala, many of the patients have liver injuries which have been caused or exacerbated by the consumption of alternative medicines.

In one case, a 16-year-old girl who presented to the clinic in urgent need of a liver transplant was found to have spent the past three years consuming alternative medicines for a seizure disorder. When a laboratory analysis of the medicines was done, it was found that they contained high quantities of arsenic.

“She had arsenic detectable in her nails and hairs. And she also developed a very special type of liver disease due to arsenic toxicity known as non-cirrhotic portal hypertension,” said Dr. Philips. He estimates that he has conducted laboratory tests on around 250 different alternative medicines, all brought to him by his patients, and has found many of them to contain contaminants such as mercury in levels “more than 100,000 times the upper limit of what is ideally recommended.”

Tampering with the processes of good science

Dr. Philips’s work has often been seen as an attack on alternative medicines, and he has faced a heavy backlash, with his laboratory being attacked twice. On social media, he said, he regularly receives threats when he posts anything critical of Ayurveda. “They send me messages, derogatory and vulgar messages, threatening me that my life is gone,” he said.

Silencing criticism is a broader problem, said Shaikh. “If you’re a non-Ayush clinician, you do not have the right to talk about Ayush,” she said. “They’re actively stopping peer review.”

In the long run, she believes that this approach to scientific research will only damage the global reputation of India in the health industry.

“It’s harming, what they want to do,” she says. “If you want to establish India as the main provider of service, whether it’s manufacturing or health service, then you’ve got to have scrutiny in place for every single step, and listen to what the scientists are saying.”

Others, such as Dr. Babu, are more hopeful that regulations surrounding alternative treatments will slowly catch up with modern medicine as the industry grows. He believes that the success of his legal complaint against Patanjali’s advertisements marks a turning point in the battle against pseudoscience.

“There’ll be some concrete action from [regulatory bodies] to prevent such misleading advertisements in future, I’m sure,” he says. “I am trusting the legal system of my country.”

But India’s legal system will have to contend with the determination of a powerful prime minister intent on ushering in, as he put it in April, alongside the WHO director general, “a new era of traditional medicine in the next 25 years.” And with the pop cultural appeal of figures like Baba Ramdev who has built a multi-billion-dollar yoga and Ayurveda empire with Patanjali, dubious treatments notwithstanding, at its heart. 

The post Modi wants to export traditional Indian medicine to the world, but doctors warn against pseudoscience and quack cures appeared first on Coda Story.

His doctor refused to order more tests, citing concerns about “over-investigating” his condition, he said. “She doesn’t think there was anything really wrong,” said Qureshi, who is 35 and remains severely disabled. Other doctors suggested he just needed exercise to get back into shape after having been sick.

Asad Khan, a pulmonologist in Manchester, England, has not been able to work more than a year out from his bout of Covid. Like Qureshi, he has found that other physicians have pooh-poohed his exhaustion and other symptoms. “I’ve been told, ‘It’s nothing serious,’” said Khan, who is 46. “I’ve also been told, ‘Do you think you’re stressed? Do you think you’re over-perceiving your symptoms?’’’

Given persistent shortages in protective gear, medical professionals in the U.K., U.S. and elsewhere have been hard-hit by Covid — and by long Covid, the disabling condition that can follow. Many have been shocked that their own clinicians and colleagues have dismissed or expressed disbelief about their continuing symptoms.

They are also angry that members of their profession are publicly hyping and researching the notion that long Covid is mainly generated by pandemic-related emotional and psychological distress. 

Last April, in a Wall Street Journal opinion piece called “The Dubious Origins of Long Covid,” Jeremy Devine, a psychiatry resident at McMaster University in Hamilton, Canada, called it “largely an invention of vocal patient activist groups” — a reference to advocates like the members of Body Politic, an online support group that drew early public attention to the issue with a self-published survey.

News and social media accounts of long Covid were enabling “patient denial of mental illness,” Devine wrote, and a decision by the U.S. National Institutes of Health to appropriate more than $1 billion to pursue the issue was “a victory for pseudoscience.” (Devine did not respond to requests for comment sent to his Twitter account and the McMaster University psychiatry department).

In the Netherlands, University of Amsterdam investigators are testing whether a course of psychotherapy designed to counter “fears and worries about COVID-19,” “dysfunctional beliefs about fatigue,” “problems with processing the acute phase of COVID-19,” and “perceived low social support” can prevent the severe fatigue reported in long Covid. The intervention is based on the presumption that these factors, among others, are perpetuating the symptoms, despite a shortage of evidence supporting the notion.

Research in this vein is “sewage” and “bonkers,” said Khan, the Manchester pulmonologist, who has at times been bed-bound for weeks, with extreme sensitivity to light, sound, and touch. He is currently in Germany undergoing apheresis, a treatment designed to clear the blood of what are called micro-clots, which some experts believe are implicated in long Covid.

“It is clear to me that medicine has fallen into a pattern where the jump to ‘this is psychological’ is instant,” he said. “Something is very wrong with the way we are dealing with illnesses where there isn’t a clear biomarker or clear abnormality on examination.” Khan is a member of a private Facebook group of more than 1,400 doctors who either have long Covid themselves or want to learn more about it. 

The effort to explain away these symptoms as psychosomatic is “rubbish” and demonstrates medicine’s blind spots, agreed Qureshi. His own physical deterioration should have triggered extensive investigations into possible organic factors, he said. Instead, he felt shunted aside by the health care system and had to move in with his parents when living alone became too challenging.

“I was a 33-year-old who has gone from being completely independent, high functioning, working as a doctor, to not being able to think clearly, not being able to do anything for themselves,” said Qureshi. The medical neglect, he added, “really opened up my eyes.”

In contrast to the long Covid skeptics, a commentary last summer in the New England Journal of Medicine called the phenomenon “our next national health disaster.” The commentary rejected claims that long Covid represented a mental illness and estimated that the U.S. could see more than 15 million cases. And that was before the omicron variant wave.

Given how medicine generally treats people with poorly understood symptoms, the commentary noted, long Covid patients could face tough going in the health care system. “If the past is any guide, they will be disbelieved, marginalized, and shunned by many members of the medical community,” warned the commentary, written by Steven Phillips, a physician and vice president of the Covid Collaborative in Washington, D.C., and Michelle Williams, an epidemiologist and the dean of Harvard’s T.H. Chan School of Public Health.

As Phillips and Williams pointed out, medicine has often stumbled when dealing with people suffering from physical complaints without an easily identifiable organic cause. In the medical literature, this category is frequently called “medically unexplained symptoms” or “persistent physical symptoms” and includes conditions that cannot be diagnosed through standard biological tests, like irritable bowel syndrome and myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.

Unfortunately, most clinicians are not House. When routine examinations fail to yield results, physicians often conclude that patients are “somatizing”— expressing psychological distress in the form of physical sensations. Patients who reject this psychosomatic view can be dogged about seeking further medical consultations and tests despite having been advised repeatedly that nothing amiss has been found. 

Doctors often refer to this persistent group as “heartsink” patients. Medical journals regularly publish articles that acknowledge clinicians’ frustrations in dealing with them and provide tips on how to gently recommend that they could benefit from some psychotherapy. Doctors with long Covid now find themselves subjected to this sort of treatment from their peers.

The emergence of long Covid should not have been surprising. In some cases, natural recovery from a serious viral infection can take many months, even a year or longer. That means many if not most of those continuing to report symptoms are likely to improve over time.

But it is also well-known that viral illness can leave a subset of survivors with years of ongoing medical complaints, said Mady Hornig, an epidemiologist at Columbia University who is also a psychiatrist. Many if not most ME/CFS patients report that their illness began, like long Covid, with a viral infection that never seemed to fully resolve.

Hornig, who has long Covid herself, recalled that one of her doctors suggested she should “start thinking about the sources of the anxiety” that were “obviously” driving her debilitating exhaustion and other symptoms. Hornig immediately rejected the explanation. “I said, ‘It’s probably true I have some anxiety worthy of further dissection, but I don’t think this is an example of that,’” said Hornig, who studies ME/CFS and is now involved in long Covid research as well.

Besides shortness of breath, profound fatigue, and cognitive problems collectively called “brain fog,” long Covid patients often suffer extended relapses even after minimal activity, known as “post-exertional malaise.” Many also suffer dizziness linked to a condition called POTS, in which standing up causes sharp heart rate increases.

In some cases, prolonged symptoms can be attributed to detectable damage to the lungs, hearts or other organs, or to having spent time in an intensive care unit, which is known to have negative effects. But many long Covid patients experienced mild cases of acute illness, were not hospitalized, and have no readily identifiable organ complications.

Estimates of how many Covid patients report continuing symptoms range from a few percent to a third and higher, depending on factors like how the syndrome is defined, which symptoms are included, and the population sampled. Research into the biology and treatments remains in its early stages. Scientists believe long Covid could be linked to a weakened or malfunctioning immune system, auto-antibodies that attack host cells, micro-clots in the blood, inflammation in the central nervous system, or a combination of these and other factors.

Those who argue that long Covid symptoms are predominantly psychosomatic often cite other unexplained conditions as precedent — and in particular ME/CFS. 

Some key symptoms of ME/CFS, such as post-exertional malaise and cognitive dysfunction, are also common in long Covid, and some long Covid patients are now receiving an ME/CFS diagnosis.

For decades, mainstream medicine regarded ME/CFS patients as suffering from an erroneous conviction of having an ongoing disease coupled with muscle loss from too little activity. Depression and related mental health issues were also often assumed to be a factor. The standard treatments were either a program of gradually increasing activity or a course of psychotherapy designed to alleviate patients’ “unhelpful” or “abnormal” beliefs of having a disease. Many patients, however, reported that pushing themselves to do more triggered serious relapses and led to greater physical and mental deterioration. 

In recent years, the traditional treatment approach has lost credibility because of growing awareness of serious lapses in the research cited to support it. The U.S. Centers for Disease Control and Prevention dropped the recommendations a few years ago. Last fall, Britain’s National Institute for Health and Care Excellence recommended against these purportedly curative treatments in new ME/CFS clinical guidelines, rating evidence for their effectiveness as “very low” or in some cases merely “low.”

Despite this shift, some of the physicians who have promoted psychological and behavioral treatments for ME/CFS are among those pushing the same approach for long Covid. This group’s continued adherence to psychological explanations for post-viral medical complaints does not surprise Johns Hopkins pediatrician Peter Rowe, an ME/CFS and POTS expert who has treated long Covid patients.

“These guys are so married to this broken hypothesis that no amount of factual information or scientific data will make them change their view,” said Rowe. “That’s theology, that’s not science.”

Nina Muirhead, a dermatological surgeon with ME/CFS in Buckinghamshire, England, said she empathizes with the doctors with long Covid confronting doubt and dismissal from their clinicians and colleagues. She recalled facing similar reactions from her peers when she was diagnosed with ME/CFS several years ago, after a bout of glandular fever from which she never seemed to recover. At times, Muirhead was too sick to take care of her kids or even watch TV, much less practice medicine. She has since improved enough to be able to work a reduced schedule. 

Before Muirhead got sick, she believed what she’d been taught about ME/CFS during her medical training — that it was driven by depression, anxiety and other mental health issues, and that patients just needed exercise and psychotherapy. She only questioned that conviction as she struggled to come to grips with her situation.

“I thought to myself, ‘Either I have a rare and serious disease which is not ME or I do have ME and the majority of the medical profession has completely misunderstood this medical condition,’” said Muirhead. When she concluded it was the latter, she said, she felt “shock and horror at the enormity of the error of considering this disease as psychologically driven.” Muirhead has advocated for improved medical education about ME and is director of Doctors with ME, a professional association that has advised some of their counterparts with long Covid.

Those arguing that long Covid is largely psychological build their case on the indisputable fact that it can be difficult to determine the source of non-specific symptoms like fatigue and problems with memory and concentration. In a recent article, Adam Gaffney, a Boston pulmonologist and critical care doctor, noted that symptoms are “common in the general population” and suggested that this phenomenon “complicates interpretation of much long Covid literature because misattribution of the cause of symptoms, by both physicians and patients, is also common.” 

Gaffney, who is also an assistant professor at Harvard Medical School, has proposed “psychosocial strain” — distress arising from the impact of social factors — as central to the reports of exhaustion, relapses, and cognitive impairment. But there is little convincing evidence to support the argument that the worldwide long Covid phenomenon is largely due to psychosocial strain, depression and anxiety. 

At the start of the pandemic, testing was scarce and doctors advised many patients to stay home unless they needed medical care. As a result,  many early long Covid patients had no laboratory evidence of having had Covid — a lack of proof that has made it easier for Devine, Gaffney and others to suggest their reported symptoms were unrelated to coronavirus infection. 

More recently, some high-profile studies have found that people who were negative on coronavirus antibody tests reported similar long Covid symptoms to those who were positive for antibodies. Gaffney and others have cited these studies to suggest that the long Covid wave is generated by virus-related fears and not by organic disease. But antibody tests can be inaccurate, producing both false positives and false negatives. They can fail to detect prior infections if someone’s antibody levels have waned or they did not produce substantial amounts in the first place.

Moreover, if people with weaker immune responses to coronavirus infection are more likely than others to develop long Covid, then it would not be particularly surprising for these patients to test negative on antibody tests taken at some later point. Gaffney declined to respond to questions about his views on long Covid.

Some doctors with long Covid have refused to accept the situation quietly. In September of 2020, BMJ (formerly the British Medical Journal) published a letter titled “From doctors as patients: a manifesto for tackling persisting symptoms of covid-19.” Signed by more than three dozen physicians, many with positions at prestigious British universities, it specifically cited the need for biomedical research.

Like Columbia’s Mady Hornig, other physicians with long Covid have also become deeply involved with research into the disorder. Despite limited energy, Asad Khan is collaborating on a number of projects in both the U.S. and Europe, including a study of apheresis, the treatment he is currently undergoing. He also maintains an active presence on social media, castigating problematic long Covid research on Twitter as “nonsense” and “unethical” and appearing in webinars about the issue. 

“My role is to raise awareness of the biomedical nature of these illnesses using my privilege as a physician patient,” said Khan.

The post The medical establishment gaslights doctors, insisting long Covid is ‘psychological’ appeared first on Coda Story.

1. The QAnon “Storm” that was threatened – but never came 

The year kicked off (was it really only 11 and a half months ago?) with the January 6 attack on the Capitol, spurred on by Qanon adherents who believed they were rallying against a deep state takeover.

The QAnon mindset dominated conspiracy groups in the dying days of Donald Trump’s presidency. And it infected people’s ideologies in the most unlikely corners of the world. In England’s land of myths, legends and ancient folklore, new conspiracy theories began to fuse with the place’s pagan traditions. QAnon became a favorite topic of conversation in the pastoral countryside’s pubs, tea-shops and castles.

Read: Castles, crystals and conspiracies: enter the spiritual home of British QAnon

QAnon, as conspiracy theories go, is a particularly damaging force to introduce into the home. People around the world lost their spouses, children, parents and siblings to Q, and the cult destroyed many people’s lives in 2021. 

Watch: QAnon destroyed my marriage 

2. The North American blizzard that sent social media alight 

In February, when a super snowstorm hit North America, conspiracist thinking affected how some people responded to it. On TikTok, a wave of videos swept the app claiming the blizzard was “government-created snow that was made by Joe Biden and the Democrats.” The basis for their claim was that when you held a lighter to a snowball, it turned black. Turns out this is actually a normal thing for snow to do – it’s a scientific process called sublimation, where rather than melting, snow immediately evaporates when a lighter is held to it. But it’s no use explaining that to a conspiracy theorist. 

Read: Texans post conspiracy TikTok videos claiming the snow is “government created”

3. The antivaxxers that discovered antisemitism – and vice versa

Anti-vaxxers were working overtime to theorize about the Coronavirus during 2020, but 2021 is when they really began to rally. Anti-vaccine rhetoric fused with toxic antisemitism in the aftermath of the insurrection claimed that the virus was a Zionist bioweapon masterminded by the figures like the Rothschild or George Soros, or Bill Gates – who they claimed was a secret “Jewish Aristocrat”. It showed how warped science was fusing with old school racism – and wouldn’t be the last time we saw that happen. 

Read: The fevered world of antisemitic vaccine conspiracies

4. The conspiracists who went suddenly analog 

As the U.K.’s spring Covid restrictions limped on, anti-lockdown movements began resorting to old-fashioned propaganda methods to spread their message. Londoners found conspiracy leaflets being pushed through their doors, advocating against the vaccine and in favor of the government dropping Covid rules altogether. In Telegram groups, anti-vaxxers posted PDF designs for their followers to print out and distribute. The idea was they were avoiding social media controls by simply printing their disinformation.  

Read: London is littered with conspiracy leaflets as Covid deniers dodge Facebook moderators

5. The Far-right anti-lockdown fanatics who tried to influence the German election campaigns 

In the run up to the German elections, which would usher in an end to Angela Merkel’s 16-year tenure as chancellor, a fringe, far-right anti-lockdown group called the Querdenken movement began rallying against the state’s Covid policies. Querdenken draws on broader global conspiracies like QAnon and welcomes fringe far rightists and neo Nazis, proliferated on social media apps like Telegram in 2021, and was the driving force behind many of the country’s anti-lockdown demonstrations. As the Omicron variant rages through Europe, the movement is still very much alive: last week, police in eastern Germany raided six houses after a Querdenken-linked Telegram group hosted discussions of plans to assassinate a Saxony state government as part of a broader revolt against Covid policies. 

Read: Anti-lockdown group Querdenken pulls Germans to the far right

6. And finally, the anti-vaxxers who said “enough’s enough.”

It takes a lot for someone who believes conspiracy theories to change their mind. But as the pandemic and its deadly effects raged on, a very small, very brave minority of people decided enough was enough. They cast aside their long-held beliefs that vaccines were harmful. The pandemic was a huge wakeup call: they saw their relatives get sick, or die from the virus. They saw hospitals cave under pressure from Covid patients. They realized they had been deceived by millionaire anti-vaccine influencers. And they admitted something courageous: They had made a mistake. 

Read: The anti-vaxxers who came in from the cold

The post The Year in Conspiracy Theories, a 2021 Round-Up appeared first on Coda Story.

Now known across Russia as the “Grandson from Tomsk,” Samborsky, 27, had gone to Moscow to knock on the doors of federal authorities to file complaints of gross medical negligence. When it became clear that instead of considering his complaints, authorities intended to arrest him, Samborsky fled to neighboring Georgia.

Sambosky told me his story when we met in Tbilisi, where he says Russian-speaking men have approached him, telling him it’s time to return to Russia. For that reason, he doesn’t share his future plans.

This text is derived from an interview with Sergey Samborsky conducted by Katia Patin. It has been edited and condensed for clarity.

Читайте эту статью на русском.

My grandmother’s name was Yulia Fedorovna. She taught Russian language, literature and history and inspired a lot of bright minds. Many of them are now scientists in our city, have masters degrees, doctorates in language. She is the brightest, most decent person I’ve ever known.

She taught me how to play the piano. She raised me from childhood and was really strict, so that I would become a good person. And here I am, not completely normal, but good enough. My wife, my other relatives, I have never loved them the way I loved my grandmother. I would go through hell and highwater for her. And I have.

In Tomsk I worked as a welder. I had a quiet, normal, calm life and didn’t have any problems. I can’t say I have a lot of friends, but the ones I have are true friends. I lived with my wife, my brother and my grandmother.

Tomsk is a really beautiful city. It’s a university town. They call it the Athens of Siberia because we’re the smartest city in Russia with the largest number of students. I am a patriot of my city and the region where I was born. I know every stream, every part of the forest in a 100 kilometer radius of my village in the Tomsk region. The people there are kind, but the problems begin with the authorities.

People are dying in our hospitals. They are being treated with medications that the WHO does not recommend for treating coronavirus, for example arbidol, gripferon. If you break your leg, or have some other injury, and your temperature is higher than 37 [98.6 F], you are automatically admitted to the Covid ward, even if you’re completely healthy otherwise, and left there. When you call an ambulance and tell them you have Covid symptoms, they will show up at your house in six days. My friend had Covid and called an ambulance. They showed up a month later.

My grandmother was 84 years old and had Alzheimer’s. I took care of her at home. She was partially paralyzed, she had nearly full muscle atrophy. I would change her diapers, feed her, wash her. On October 21, around 5 p.m. in the evening, I was preparing food for her when she started gurgling. I turned around and she had foam coming from her mouth, her eyes had rolled back and her lips were blue. I called the ambulance.

When I got to the hospital, my grandmother had already been taken away for a CT scan. I walked up to registration, asked where she was and they directed me down the corridor where about 50 people were sitting and coughing. All with Covid. I walked by an elderly woman sitting on a stretcher practically naked with a mask underneath her chin. She was shaking from the cold. I asked a doctor for help and it took 15 minutes for him to find a nurse to get a blanket.

Then I went to find my grandmother. She was in a room with five beds, all Covid patients. The doctor said that she needed oxygen. I took down the phone number of the woman in the bed next to her and left after about an hour. The next day, I called the woman. She said no one had been in to see my grandmother. No one had fed her, washed her or changed her diapers. They had tied her to the bed.

This was really a shock to me. I’m an impulsive person. I got up and went straight away to the hospital. I watched nurses coming in and out of the hospital without even taking off their protective clothing. They would go for a smoke and then walk back in with their dirty shoe covers.

So I walked up to a parked ambulance and bought some protective gear off of the drivers. They aren’t allowed to do that but they sold it to me for double the cost. This is Russia. I walked to the back of the building where there is a small forest and changed. I had a protective suit, a mask and goggles. There was no security, the door was wide open. I started filming, walked in and no one looked at me twice.

When I got to my grandmother, I was horrified. I don’t know why they had tied her to the bed, her entire arm was covered in bruises from the restraints. I checked my grandmother’s diaper, it was filthy. She had her oxygen mask up on her forehead. She has three bed sores, one on her knee, two on her hips. They had changed the bandage on the right side, but on the left hadn’t even touched it.

How to explain this? It’s apathy and laziness. This is not some exceptional case. This is happening across Russia’s hospitals. I’ve had hundreds of people write to me with their own stories since I published my videos.

I spent eight or nine hours a day in the ICU. I would come in and out but for the most part was hiding, not to draw more attention to myself. Some of the other patients would ask me for water or to help with their bedding. I took out the trash.

Sunday, October 25 was the last day I was in the hospital before they discovered what I was doing. I sat down next to my grandmother on the bed and she looked up at me. She said, “Seryozha I love you.” She recognized me for a few seconds. She hadn’t recognized me in over three years. For that, it was all worth it. 

I gave my footage to the local channel TV2. TV2 is an exception in Russia. It’s the best regional channel in the country, they are always covering people’s real problems and telling the truth no matter how many times they’ve been threatened. Within two or three days, my story was all across Russia. At first, I stayed anonymous and was called the “grandson from Tomsk.” After TV2 published my story, the police confiscated their footage and called in their editor Aleksandr Sakalov for questioning.

Next, I thought that Moscow could help me. Moscow doesn’t know what is happening in the regions. Or maybe they know but just don’t acknowledge it publicly. There is this rap group called 25/17 from the city Omsk and they have this lyric: “My Moscow is the capital of your country.” Moscow really is a separate country. There are different people there, different laws. I thought Moscow was my last hope.

So I left Tomsk for Moscow for the first time. I went to the main office of the investigative committee. I offered to show my videos to the person I was directed to. “What’s the point in that?” He was completely unmoved. He said, “You’re welcome to file a complaint but if you get a response, it will take at least a month.”

I went to the federal prosecutor’s office and the office of the presidential administration. From all these places I got the runaround. The investigative committee told me to write to the regional office. The prosecutor’s office recommended that I also go to the regional office. I got the same from the office of the president.

When I was in Moscow, the story became national news. A media campaign started against me across the pro-government channels. REN-TV was the worst. It’s a disgusting channel. We had agreed that they won’t publish my full name and will blur out my face, my grandmother’s face and the sensitive footage of her. But they showed everything. I told the truth about medical care in Tomsk and in Russia, the truth about our government. And now all the state channels were trying to drown me.

I’ve been accused of doing all of this for my grandmother’s retirement payments. That I beat her, had her chained to a radiator, starved her, kept her as a prisoner.

In Russia you hardly need to give people a reason to devour you. My story was forcing people to wonder whether their loved one had died from a disease or because of indifference from the system.

When I flew back to Tomsk, I was called in that evening to the local investigative office for questioning. They told me to hand over my phone and said they suspected that the video was fake, that I had edited the footage and made up the whole thing. They threatened to arrest me on the spot and search my home. I refused to hand over my phone.

On October 30, my grandmother died. The official cause of death was pneumonia. Not a single word about coronavirus. I always imagined my grandmother would die peacefully at home, the way we all should. It was her dream to pass in her sleep. But in the end, she died in despicable conditions.

I have a relationship with someone working in the police. He told me, “They are discussing opening a criminal case against you and you have to leave.”

I buried my grandmother, left Tomsk and Russia.

Now I’m in Georgia but I don’t feel safe here. I’m Russian. I still can’t get used to the fact that the police are okay here. I’ll be walking and hear a police siren and get all tense. The aftershocks of living in Russia.

Today is my birthday. We were celebrating last night. At midnight we opened a bottle of wine, had some food, and three people came up to me. They said, “Sergey Samborsky, it’s time to go back to the homeland.” These people aren’t my friends, they aren’t my relatives. My real friends wouldn’t tell me to come back home now. These were people somehow connected to the government.

It’s my 27th birthday today, I hope it’s not my last.

The post I disguised myself as a Covid ICU doctor to care for my grandmother. Now, the Russian government is after me appeared first on Coda Story.

1. Jennifer Lincoln, known to her over 2 million TikTok followers as @drjenniferlincoln, is a Portland, Oregon-based obstetrician-gynecologist. Lincoln’s short, humorous videos, based on scientific research, covers a wide range of subjects about health, mythbusting about period pains, treating vaginal infections with pseudoscientific cures or misinformation about sexually transmitted infections and safety of Covid-19 vaccines. She also uses her platform to discuss pressing issues like widespread inaccessibility of hygienic menstrual products, birth control, abortion or how to become an OB GYN whose practice is inclusive of people with different gender identities.

2. Alease Daniel, or @aleasetheembryologist on TikTok, is a Raleigh-based embryologist, who has introduced her more than 124,000 TikTok followers to her IVF lab. IVF is a method of assisted reproduction with sperm and eggs combined outside of the body in a laboratory dish. Millions of TikTok viewers have seen her work in the lab, talking through the procedures like prepping dishes for IVF to retrieving the eggs or counting sperm. She also uses her videos to debunk reproductive misconceptions. Daniel has told Wral that she’s posting videos because fertility treatment can leave people feeling out of control and having knowledge about the process provides a little bit of peace of mind.

3. Tanaya Narendra, @dr_cuterus on Instagram, is a gynecologist, who uses her social media account to post videos and illustrations about reproductive health, safe sex, body positivity or safety of Human papillomavirus (HPV) vaccines, that prevent some strains of virus causing cervical cancer. Her posts in English and Hindi are short, funny and educational, like this video titled “Dude, where’s my vagina?” explaining the anatomy of the uterus using an anatomical model.

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4. Ali Rodriguez, also known as The Latina Doc or @alirodmd on TikTok, is using her dancing TikTok videos to answer questions and clear misconceptions about reproductive health in English and Spanish. In October, she told VerywellHealth that being a Latina, she understands the stigma and secrecy surrounding reproductive health and contraception and her patients from the Latinx community often are exposed to misinformation or lack of information about it. 

5. Natalie Crawford, or @nataliecrawfordmd on TikTok, is a Texas-based obstetrician-gynecologist and fertility specialist. Since 2019 she’s been sharing fertility-related information on ovulation, reproductive health and diets. She’s also been posting informative videos about endometriosis, a long-term condition where tissue that normally lines the inside uterus grows outside of it, usually causing severe pain and sometimes other issues such as infertility. Endometriosis can be debilitating and can take years to diagnose and treat accordingly. Crawford also runs Instagram and YouTube accounts to share information more extensively than she can do in few-second TikTok videos.

The post The physicians debunking the massive misinformation about women’s health appeared first on Coda Story.

“The drug will be given twice daily to treat vulnerable patients with the disease,” she said, then explained that the manufacturers have stated that it almost halves the risk of hospitalization or death when given to patients with mild to moderate symptoms. 

Rapidly, Saleem’s video was flooded with angry comments. “New World Order,” read one. “It’s population control. They know some of us don’t want the jabs. Do they want to kill us with pills?”

“So if u don’t want an experimental jab u can take an experimental tablet,” said another. 

Relatively inexpensive to manufacture and hailed as a “godsend” to parts of the world without comprehensive vaccine coverage, molnupiravir is being widely viewed as an exciting breakthrough in the fight against Covid-19. 

But the anti-vaccine brigade has rejected it, believing that the drug is part of a global conspiracy to scam and oppress people. Some have developed more elaborate explanations, stating that it is really ivermectin — an anti-parasitic treatment unproven against the coronavirus, but long touted by conspiracy theorists —  in disguise.

This narrative has been pushed by an online movement known as the Front Line Covid-19 Critical Care Alliance. The group, which has more than 140,000 Twitter followers, is formed of doctors and commentators who dismiss vaccines as a preventative measure against Covid-19 and promote ivermectin as a miracle cure. 

A number of doctors took to TikTok to debunk the theory, showing how the chemical structures of the two drugs are not the same. “The Ivermectin cult is already on this. These people never stop. These are completely different drugs. This is basic research,” Dr Siyab Panhwar, a U.S.-based heart doctor, told his 300,000 TikTok followers. 

“It’s funny because the backlash started right away, as soon as the first press release came out from Merck a few weeks ago,” Panhwar told me, explaining that anti-vaxxers appear to now have a kneejerk response against any treatment for Covid-19 developed by the pharmaceutical industry. 

“They want ivermectin, they want herbs, they want vitamin D,” he said. “It’s very politicized. I think the idea of being anti-Big Pharma, anti-establishment, anti-government is very attractive to people.”

Some scientists have raised concerns that the drug could hasten the arrival of new variants. Merck, however, says it has found no evidence of this, in a statement made by the company’s head of infectious disease discovery to the Advisory Board, a Washington D.C.-based health consulting organization. 

Other companies are also developing pills for the treatment of coronavirus. Last week U.S.-based Pfizer unveiled trial results indicating that its antiviral pill could cut risk of hospitalization or death from Covid-19 by 89% and that, pending approval, it could be ready by early 2022. 

While many medical professionals appear to be optimistic about the new tablets, they remain committed to vaccination as a first line of defence against the virus. “It sounds very promising,” said Panhwar of molnupiravir. “But it’s a treatment. None of it is preventative. The only thing that’s preventative is the vaccine — and prevention is better than any cure.”

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According to Claudio Michelizza, founder of the Italian fact-checking site Bufale.net, during the first wave of Italy’s coronavirus crisis, “disinformation websites contributed to the climate of uncertainty. People started believing that Covid was planned.”

The online spread of misleading narratives is a particular cause for concern in Italy. According to an April 2021 report by the global activist platform Avaaz, Italian speakers are the non-English users in Europe “least protected” against disinformation on Facebook, with 69% of the content examined not fact-checked by the platform’s moderators. And while social networks like Facebook and Twitter have removed many “superspreader” accounts, a multitude of smaller pages still seem to fly under their radar — including Oltre.Tv, which had operated on Facebook since 2011.

In December 2020, the global misinformation-tracking organization NewsGuard identified an network of seven Italian websites and Facebook pages that shared each other’s posts and articles almost simultaneously. The network includes Oltre.Tv. NewsGuard calculated the network’s reach at over 1.5 million followers. Since then, a sister site to Oltre.tv has appeared — Gasp.News — that publishes and shares similar content.

The network of Facebook pages mainly share articles from Oltre.Tv with false claims about the pandemic, such as an interview with an Italian psychiatrist who referred to Bill Gates as “a nerdy psychopath”, whose efforts to fund Covid vaccines would transform people into robots.

From the outset, Oltre.Tv had strong anti-science leanings. “The Facebook page was born with a focus against multinationals. Its first name was ‘Let’s boycott multinationals,’” said Luca Nicotra, a campaign director at Avaaz, who has been following Oltre.Tv’s network since 2019. “Since the beginning, it had an anti-vax position.”

Oltre.Tv’s Facebook page was taken down in May 2019, after an investigation by Avaaz revealed its participation in a wide network promoting the populist Five Star Movement and right-wing Lega Nord, which swept Italy’s Parliamentary elections in 2018 and 2019. Over 23 Italian Facebook pages that had been posting disinformation and hate speech in support of the parties were removed.

Days later, however, a new Oltre.Tv Facebook page appeared. It has been sharing questionable content ever since. 

Oltre.Tv and Gasp.News both run ads through Google. The Italian newspaper Corriere della Serra has stated that the network could generate between 2,000-4,000 euros a month. 

Oltre.Tv and Gasp.News share a publishing team and an owner — ArcanetWeb SRLS, a digital marketing and communication company. The sites’ content editor, Daniele di Luciano, told Coda in an email that he does indeed run the seven Facebook pages that NewsGuard identified and the Gasp.News page. NewsGuard also characterizes Oltre.Tv’s content as having a right-wing, anti-immigration and anti-abortion bias.

Di Luciano disagreed with NewsGuard’s findings and said Oltre.tv is neither right nor left wing. He also questioned NewsGuard’s rating and analysis process. Writing in Italian, he said, “Oltre is a simple news site, like many others.”

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The study connects the dots between some of Europe’s most high-profile anti-LGBTQ and anti-abortion campaigns of the past decade and funding from international oligarchs, aristocrats, and religious organizations.

EPF found that over $700 million in funding to the European groups in over a dozen countries came from just 54 organizations in America, Russia and the European Union between 2009-2018. Over half of that came from organizations and figures in the EU. While previous reports have cataloged the funding streams of American entities, including the Billy Graham Evangelistic Association and the Charles Koch Foundation, in this arena across Europe, the extent of EU-grown funding was previously unknown. 

“We’re at the beginning stage where European anti-gender groups are going to internationalize in the way that American groups have done for a decade or so,” said Neil Datta, Secretary of the European Parliamentary Forum on Sexual and Reproductive Rights.

Datta pointed to Poland’s rightward shift over the past decade as evidence of where this spending has been most effective. The transnational Catholic movement Tradition, Family and Property (TFP), which originated in Brazil, and its Poland-based organization Ordo Iuris have been behind some of the most extreme recent anti-gender-rights initiatives, including the 2016 bill to ban abortion, a law to criminalize sexuality education, and so-called “LGBTQ-free zones.” The TFP network has raised over $113 million between 2009 and 2018, according to the report. 

The report also highlights the Jérôme Lejeune Foundation in France which is well-known for its advocacy around children’s disabilities. The report lays out how in 2013, the Foundation formalized an international anti-abortion movement called One of Us into an NGO and began organizing activities around Europe including marches and forums. One of Us has generated over $31 million between 2009 and 2018, according to the report.

“This is one that tends to go under the radar. They have a very good reputation because they do a lot of work which supports valid issues,” Datta says. 

The report concludes that these foundations, wealthy donors and religious actors are coalescing around multiple “mutually-reinforcing projects” to advance an anti-gender-rights agenda.

“What struck me was the multiple interrelationships between so many of the anti-gender movements which are really on the extremist fringe of the political discourse and aren’t grounded in values of human rights and democracy,” said Datta. “It’s not normal to see these groups interact with each other, but it does look like they have been forging consensus around a common enemy.”

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The Center for Digital Hate, based in Washington D.C., has called on social media companies to deplatform leading anti-vaxxers, who are responsible for the majority of vaccine misinformation generated online. The Center’s CEO, Imran Ahmed, said that the $36 million estimate was conservative and that their real profits could be much higher. 

In March, the Center identified a “disinformation dozen” of influencers who have been responsible for almost two-thirds of all anti-vaccine social media content shared or posted in February and March. According to Ahmed, influencers’ confidence in spreading propaganda online comes from “years of impunity,” during which they have been allowed to broadcast their message without consequences. 

A Facebook company spokesperson disputed the report’s estimates about advertising revenue generated by anti-vaxxers, adding: “We are running the world’s largest online vaccine information campaign, labelling every post regarding the vaccines with accurate information and we’ve removed profiles, pages and content identified in these reports. During the pandemic we’ve removed 18 million pieces of harmful misinformation about Covid-19 and worked with 80 fact-checking organizations to label over 167m posts as false.” 

“Anti-vaxxers are dependent on Big Tech’s failure to take enforcement action against them, despite serially breaking the community standards of the major platforms,” said Ahmed. “We need government authorities, including regulators and prosecutors, to take rapid action to establish the scale of their malignant activity and then clamp down on criminal profiteering from health misinformation.”

The Center for Countering Digital Hate’s investigation also found that influencers’ attempts to push their followers onto “lifeboat” accounts on smaller platforms such as Telegram has had limited success, while deplatforming is successful in preventing them gaining wider audiences. The report states that leading anti-vaccine organizations led by big names in the industry, such as Robert F. Kennedy Jr., Del Bigtree and Larry Cook, have admitted in legal filings that they need mainstream platforms, such as Facebook and YouTube, in order to make money and spread their ideas. 

“Deplatforming disinformation superspreaders doesn’t mean they move elsewhere and carry on as normal — in their own words, it has ‘demolished’ their ability to spread misinformation,” Ahmed said. 

The report also delves into the complex web of marketing and profiteering that makes up the anti-vaccine industry, highlighting how influencers often collaborate to promote each others’ content and sell products via affiliate links. One example highlights the case of the U.S.-based anti-vaccination entrepreneurs Ty and Charlene Bollinger, who claimed to have paid out $14 million to others who promoted their digital and physical products online. 

Covid-19 has provided a marketing bonanza for anti-vaccine influencers, according to Ahmed. “Throughout this pandemic, people around the world took unprecedented steps to keep each other safe, but it was Christmas morning for anti-vaxxers, who profited at the expense of public health,” he said.

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Last week, Joseph Mercola, the U.S.-based multi-millionaire behind mercola.com, announced his decision to remove all articles on his site that claimed certain vitamins and supplements could treat, prevent or cure the virus. 

Anti-misinformation groups see the move as an important step towards holding anti-science influencers to account. Mercola, who has over a million followers on Facebook, has promoted a number of unproven treatments or cures for Covid-19, including the inhalation of bleach.

“Joseph Mercola is a superspreader of anti-vaccine and Covid disinformation,” said Imran Ahmed, CEO of the Center for Countering Digital Hate. “The fact that he has said he will self-censor shows the impact of penalizing anti-vaccine propagandists.” 

Mercola is also a prominent backer of the anti-vaccination movement — over the past decade, he has donated a total of $4 million to anti-science groups, including the U.S.-based National Vaccine Information Center, a leading anti-vaccine organization. 

The millionaire announced his decision following the publication of a damning report about Mercola and 11 other anti-vaccine influencers by the CCDH in March. The CCDH, alongside U.S. lawmakers and 12 state attorneys general also pressured social media companies to act on the influencers. In March, the Food and Drug Administration sent a letter to Mercola, warning him to stop promoting dietary supplements as treatments for the virus. 

The CCDH identifies Mercola as one of a “disinformation dozen” of popular influencers who have peddled harmful anti-science content during the pandemic and are responsible for 65% of anti-vaccine material on Facebook and Twitter. Over the past month, 19 Twitter, Facebook, and Instagram accounts operated by the anti-vaxxers have been removed — though Mercola’s all remain active. 

The anti-science movement has surged on social media during the pandemic, and the CCDH estimates 31 million people follow anti-vaccine groups on Facebook. 

Announcing his decision to remove the articles, Mercola, whose latest book “The Truth About Covid-19” is currently at #12 on Amazon’s bestseller list, called the Center for Countering Digital Hate a “progressive cancel-culture leader,” and blamed Bill Gates and big pharma for having to delete his content. “You’d think we could have a debate and be protected under free speech but, no, we’re not allowed. These lunatics are dangerously unhinged,” he added in a post on Mercola.com.

Responding to a request for comment on this article, a Mercola representative defended the accuracy of Mercola’s positions and said his critics are in the pocket of the pharmaceutical industry.

This article has been updated to include a response from a Mercola spokesperson.

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Record numbers of more than 300,000 new Covid-19 cases are being reported daily, hospitals are so overwhelmed they are unable to accept new patients, oxygen and medicine supplies are depleted, and people are dying without medical care.

Over the past few weeks, as the nation’s death toll has exceeded 200,000 people, many have taken to social media to ask for help and seek information about intensive care beds and vital oxygen supplies. Others have volunteered their time, putting in long hours to disseminate reliable information that can help desperate patients and relatives. 

However, online misinformation has received a corresponding boost. Rajneil Kamath of the fact-checking initiative NewsChecker says that the organization’s workload has doubled in the past month and that it is receiving dozens of false claims to debunk every day. 

As with many other places in the world, India has witnessed an explosion of junk science and conspiracy theories related to 5G. One extensively shared WhatsApp message stated that radiation from cell phone towers “mixes with the air and makes it poisonous and that’s why people are facing difficulty in breathing and are dying.”

Another video, in which a doctor suggests using nebulizers as a substitute for oxygen, has had tens of thousands of views and was even shown by Prime Minister Narendra Modi on a YouTube version of his monthly radio show Mann Ki Baat. Medical professionals have said that nebulizers, which allow patients to inhale liquid medicine as a mist, are useless for increasing oxygen intake and could worsen the condition of people with coronavirus.

According to Kamath, the internet is also rife with vaccine disinformation. India’s vaccine stocks are running out and the country is struggling to inoculate its 1.4 billion population. At the same time, widely viewed online posts claim that the shots reduce the human body’s natural immunity and advise women not to get injected at certain points in their menstrual cycle. As millions of people attempt to protect themselves against the virus, fake and unproven cures are gaining renewed traction, including inhaling camphor or using steam therapies. 

“A lot of claims that were viral and debunked last year came back,” Kamath said. “It’s surprising that we’re already a year into this, but even now people are circulating these things.”

Meanwhile, the national government and states across India have been criticized for mishandling the crisis by allowing thousands to attend political rallies and religious festivals, and ignoring pre-existing needs for better health infrastructure. There have also been accusations of widespread underreporting of deaths, following news stories featuring overwhelmed cremation sites, which appear to indicate that official numbers are being downplayed. 

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“We are more afraid of risks that we can’t see,” said David Ropeik, an author and risk perception and communication consultant who has written extensively about the subject. “That’s a lack of control. That’s an awful lot of emotional baggage that radiation has to deal with.”

While events such as the Cold War nuclear arms race and the Chernobyl disaster did much to stoke widespread panic, scientists have long confirmed that low-level radio waves pose little risk to our health. However, bad science and conspiracy theories have continued to swirl around what many still believe to be an invisible enemy. Here are just a few examples.

Microwaves and ovens

Ever since their introduction in the 1940s, microwave ovens have been the source of scientifically dubious fears. First intended for commercial catering, they made cooking faster and easier, but many considered them hazardous to health. Some opponents said they would remove nutrients from food or render it radioactive. Many believed that they would cause cancer.

In 1968, the U.S. Food and Drug Administration’s Bureau of Radiological Health authorized the Radiation Control for Health and Safety Act, which established safe radiation exposure limits. It turned out that early microwave ovens exceed its figures, but manufacturers acted quickly to fall in line with the new rules.

Still, the worries persisted. In 1998 the Journal of Natural Science, published by the World Foundation of Natural Science — an international -faith-based organization that has recently promoted dubious ideas about 5G and Covid-19 — ran an article based on the now-discredited studies of a Swiss biologist named Hans Hertel. “One day the world will wake up to the fact that microwaves do cause cancer, and are even worse than cigarettes. Microwaved food causes a slow death,” it read. 

While concerns about radiation and food safety remain, the World Health Organization has said that, used according to manufacturers’ instructions, microwave ovens are safe for cooking. “The design of microwave ovens ensures that the microwaves are contained within the oven and can only be present when the oven is switched on and the door is shut,” stated a 2005 report.

Nuclear threats

In the first half of the 20th century, radiation was mostly viewed as a force for good. The use of radium in the treatment of cancer received glowing media coverage, as did the medical use of X-rays. 

The atomic bombings of Hiroshima and Nagasaki by U.S. forces in 1945 changed everything. Over the following decades, serious incidents intensified global concern about the threat of nuclear radiation. In 1954, the Castle Bravo test saw the U.S. detonate a 15 megaton thermonuclear device on Bikini Atoll in the Marshall Islands. A miscalculation of the bomb’s yield led to radiation spreading much further than expected. Twenty-three crew members of a nearby Japanese fishing ship suffered acute radiation sickness, and one of them later died from complications linked to the explosion.

Such events had a detrimental effect on attitudes to nuclear power. Growing concerns about the safety of the technology became a devastating reality in 1986, when a reactor exploded at a nuclear power plant near the city of Chernobyl, Ukraine. Dozens died from direct radiation exposure and thousands more suffered from related illnesses. An official coverup of the incident and its implications only added to rising anti-nuclear sentiment.

While the conversation about the safety of nuclear power continues, some environmentalists now believe it to be a valuable energy source that can help to reduce climate-altering emissions.

Power lines

In the 1980s, concern began to spread that overhead power lines were responsible for increased incidences of leukemia in children across the U.S. Research carried out in 1979 by the epidemiologist David Savitz highlighted a group of young cancer patients in Denver, Colorado, and suggested that children who lived near electricity pylons were twice as likely to develop the condition as those who didn’t. 

Years later, Savitz clarified his findings and said the importance of his study had been diminished by subsequent research. “The line of logic was that these fields are very common. And that the logical prediction would be that this would be a major public health problem. And that was simply wrong,” he told the New York Times in 2014.

While there is still no confirmed link between power lines and cancer in children, the concerns have continued to manifest themselves in other ways. More recent reports show that living close to electricity pylons can negatively affect real estate prices.

Cellphones

In 1973, Martin Cooper, an executive at Motorola, made the world’s first call with a prototype mobile telephone. Ten years later, the technology became available to the general public. Now, about 3.6 billion people — or 45% of the world’s population — regularly use a smartphone. However, the belief that cellular technology is detrimental to health has long been widespread. 

One major driver of fears emerged in 1993 when David Reynard from Madeira Beach in Florida went on the CNN talk show Larry King Live and said his wife had died from a brain tumor because of radiation from her cell phone. Reynard sued the manufacturer, NEC America, but the case was later dismissed because, according to the judge, the claim lacked substantial scientific research.

Although health authorities around the world maintain that radiation levels from cell phones are so low as to be completely safe, producers of “anti-radiation” devices have sought to monetize public health fears. In the early 2000s, cell phone radiation shields appeared on the market, alongside phone cases that promised to neutralize allegedly harmful emissions. Global studies have found no evidence that they provide any protection, and the Consumer Protection Agency of the United States and the Federal Trade Commission has warned people against buying them. 

5G Networks

Opponents believe that new 5G cellular networks cause cancer, damage the environment and blight the lives of individuals who suffer from “electromagnetic hypersensitivity.” While EHS is not a recognized medical condition, large numbers of people say that the technology is directly responsible for a variety of symptoms, including headaches, nausea, dizziness and chronic fatigue. 

The rollout of 5G also coincided with the start of the coronavirus pandemic in 2020. Accordingly, theories linking it to Covid-19 have proliferated around the world. Some assert that 5G frequencies have helped transmit the virus, while others say that they weaken the human immune system, rendering people vulnerable to infection.

The anti-5G lobby has brought together conspiracy theorists, fringe scientists, populist politicians, environmental activists and a number of celebrities. Their ideas have spread across Twitter, Facebook, YouTube and WhatsApp. Throughout the pandemic, activists have taken part in anti-lockdown protests and set fire to 5G communications masts across Europe, New Zealand and Australia. 

There is no credible evidence that 5G technology is detrimental to health in any way. Scientists have reported that the waves given off by 5G towers are incapable of damaging our cells. 

As Dr. David Robert Grimes, an Irish cancer researcher and campaigner against medical misinformation, told BBC back in 2019, “It’s crucial to note that radio waves are far less energetic than even the visible light we experience every day.”

Mariia Pankova contributed to research.

The post A brief history of radiation fears appeared first on Coda Story.

“If symptoms appear, go to the hospital immediately, do not lie at home. Our doctors have found a way to cure the disease in a day or two at the initial stage,” read a caption attached to a video of people apparently labeling bottles of the preparation.

To date, Kyrgyzstan has registered over 92,600 coronavirus cases and 1,561 deaths.

Known locally as issyk-kul root, aconite has long been used in traditional Chinese medicine and homeopathy. Some studies suggest that chemical compounds found in the plant might have some health benefits, but the research is scant. The overwhelming majority of medical experts consider it to be highly toxic and warn against its use in any form. 

“People use aconite in folk medicine, primarily against cancer,” said Egor Borisov, a doctor at the Emergency Medicine Center in the Kyrgyz capital, Bishkek . “Mainstream medicine does not support or use such treatments. Aconite is primarily a poison.”

Following widespread media criticism, the original post on Japarov’s Instagram was deleted. According to Radio Free Europe/Radio Liberty’s Kyrgyz service, Facebook also removed a similar post for disseminating “incorrect information that may pose a threat to human health, including on the treatment of COVID-19 or its prevention.” However the president’s office stated that it had removed the posts independently. 

Four aconite poisonings have already been reported in Kyrgyzstan. The country’s health minister Alymkadyr Beishenaliyev told the independent Kyrgiz news site 24.kg that the incidents involved cancer patients and were not connected to Covid-19. He also suggested that they had been self-medicating and had probably made mistakes with the dosage. At a press conference on April 16, he publicly drank the tincture.

World Health Organization representatives in Kyrgyzstan have said that there is no data to suggest that aconite has any beneficial effect against Covid-19 and have warned strongly against the use of unproven and untested treatments. 

Japarov’s statements have come as a surprise. Until recently, he had called for people to wear masks and get vaccinated against the virus. Now, it appears that he is just one of many leaders — from Brazil’s Jair Bolsonaro to Turkmenistan’s Gurbanguly Berdimukhamedov — who have embraced dangerous pseudoscience during the pandemic.

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She finally received a diagnosis of myalgic encephalomyelitis, also known as chronic fatigue syndrome. When other approaches failed to improve her health, she learned through “a friend of a friend of a friend” about something called the Lightning Process — a three-day in-person course that could, purportedly, help people recover from the illness.

Murphy, 30, who lives in Bournemouth, England, and worked in childcare before becoming ill, had no idea what the Lightning Process was or how it was supposed to work. She enrolled anyway. Her mother drove her to the training, which took place in a quiet country setting about a half-hour away and included a few other patients. When she arrived, she was reassured by the trainer’s words. 

“She was like, ‘Don’t worry, you’ll be better in a few days — you’ll be dancing out of here,’ all this wonderful-sounding stuff, so I was quite hopeful,” Murphy told me via WhatsApp.

As she soon learned, the process involved a specific sequence of verbal statements and movements designed to derail the thoughts and actions that were supposedly causing her illness and jump-start healthy changes. To demonstrate, the trainer stood up at one point and extended her arm, holding her hand upright. 

“She said, ‘Stop! I have a choice, I can choose the pit or I can choose to live a life I love, and I choose to live a life I love!’” recalled Murphy. More vocal affirmations and exclamations followed. “In a nutshell, she was trying to sort of meditate or visualize herself in a good place and imagine away her symptoms,” she said. 

Murphy found the prospect of performing such actions over and over again to be daunting. “They say to do the Lightning Process whenever you’re having a symptom, whenever you’re feeling ill,” she said. “But I feel ill constantly, so how does that actually work? It’s not physically possible. Does that mean you just spend the rest of your life doing the Lightning Process?” 

When she raised questions like these at the gathering, the trainer admonished her for being “negative.” Despite her concerns, she yearned to get well and struggled for months to implement the program and stay active. Finally, she suffered a major relapse that landed her in the hospital with “crushing fatigue,” “pain all over my body,” “severe dizziness,” and “the worst migraine I’ve ever had.” She decided she’d had enough of the Lightning Process. 

“I can say, hand on my heart, that I gave it everything I had, and it didn’t work,” said Murphy, who remains homebound.

Psychological and behavioral interventions

Chronic fatigue syndrome — or ME/CFS — is a poorly understood ailment marked by profound tiredness, cognitive dysfunction, sleep disorders, and an unusual symptom called post-exertional malaise, a pattern of relapses after minimal activity. Many patients report that an acute viral illness triggered their ongoing succession of medical problems. It is estimated that as many as 2.5 million people in the U.S. live with ME/CFS and up to 250,000 in the UK, many of them undiagnosed. Seriously ill patients can be homebound for years. Some are bedbound and cannot tolerate lights, noise and other stimuli. 

In past decades, much research into ME/CFS treatment was devoted to psychological and behavioral interventions. More recently, these studies and their reported findings have been widely criticized as deeply flawed. A 2015 report from the U.S. Institute of Medicine (now the National Academy of Medicine), based on an extensive review of the literature, declared ME/CFS to be a “serious, chronic, complex, and systemic disease” not a psychiatric or psychological disorder.

Given the lack of approved pharmaceutical treatments, many patients have sought relief from alternative approaches — and the Lightning Process has been among the most controversial. Developed in the late 1990s by a British osteopath named Phil Parker, it is a goulash of osteopathy, life coaching, neurolinguistic programming, hypnotherapy and positive psychology. 

Parker’s official Lightning Process website, which attributes chronic illness to hyperactive stress responses, refers to it as “a training program that teaches you to change the way your nervous system controls your body.” But critics say that Parker’s expansive scientific claims — which he and colleagues outlined in a 2018 paper in a peer-reviewed Romanian publication titled the Journal of Experiential Psychotherapy — are not supported by legitimate research. 

“Despite trying to suggest a physiological basis for their approach, all the theory appears to consist of is that if someone is too stressed by being ill then telling them to stop being stressed will cure them,” wrote Jonathan Edwards, a professor emeritus of medicine at University College London, via email.

Last fall, the UK’s National Institute for Health and Care Excellence issued a draft of new clinical guidelines for ME/CFS, which highlighted the key symptom of post-exertional malaise. The draft noted possible harms from increased activity and specifically advised against the Lightning Process. 
These days, Lightning Process practitioners are seeking to engage a new wave of potential clients: the long-haulers reporting persistent and often debilitating symptoms after an acute bout of Covid-19. This phenomenon, often called long Covid, can at times resemble ME/CFS, although the extent of the overlap between the two conditions remains uncertain.

Charles Shepherd, a Lightning Process critic and medical adviser to the ME Association, a U.K. organization that advocates for the interests of ME/CFS patients, noted this development with concern. “It is very worrying to find that desperate people with long Covid are being encouraged to spend large sums of money on the Lightning Process, a treatment that is completely unproven in relation to long Covid and ME/CFS,” he told me, via email.

In a recent email Parker sent in response to questions for this article, he told me that, so far, fewer than 100 people had taken the Lightning Process course for long Covid. “The anecdotal results are promising but it’s far too early to tell if the LP provides a useful solution for this issue,” he wrote. 

Parker has spent decades exploring alternative approaches to health. Years after he had developed the Lightning Process, he promoted an enterprise called the European College of Holistic Medicine Healing Course. According to a website archived in 2007, Parker and a colleague were co-leaders of the program, which included lessons on, among other topics, “how to contact your spirit/healing guides to help you create the right space for healing,” “the use of divination medicine cards and tarot as a way of making predictions,” and “the use of auras for diagnosis of a client’s problems.” Student healers would also learn how to prepare a location in advance “so that any energy polluting the room will not interfere with the work you are doing.” 

Parker’s biography on the archived website offered details on his provenance as a spiritual clinician. While working with his osteopathy patients, it noted, Parker “discovered that their bodies would suddenly tell him important bits of information about them and their past, which to his surprise turned out to be factually correct!” After that, “he further developed this ability to step into other people’s bodies… to assist them in their healing with amazing results.” In 2019, according to his LinkedIn profile, Parker completed a doctorate in psychology at London Metropolitan University. 

In his email, Parker acknowledged his role with the European College of Holistic Medicine Healing Course, but dismissed it as irrelevant to his simultaneous work involving the Lightning Process. “I did once co-run a course, 14 years ago, on approaches to health based on concepts from alternative perspectives and non-western cultures,” he wrote. “However, I’m not and have never been a tarot expert or aura reader. This interest had nothing to do with the LP design and has no relevance to the LP.”

Blame and abdication 

Lightning Process training takes 10 to 15 hours over three days. The cost, including three hours of individual follow-up calls, is around $1,200 with one of Parker’s three associates and nearly $2,800 with Parker himself, according to his website. Private sessions are also available.

Some participants have subsequently trained to become official Lightning Process practitioners. A 2017 online news article in The BMJ, a major medical journal, zeroed in on this point, observing that the Lightning Process “has a cultish quality because many of the therapists are former sufferers who deliver the programme with great conviction.” A map on the U.S. site for the Lightning Process indicates close to 150 practitioners around the world, including just over 100 in Europe, mostly in the U.K., 13 in the U.S. and Canada, and 23 in New Zealand and Australia.

Lee, a 52-year-old musician and artist in Brisbane, Australia, became homebound with ME/CFS in 2009. Describing his years of suffering, he recalled being close to suicide at certain points. He began to feel a bit better in 2018, after trying some “brain retraining” approaches, and last year experienced “enormous” improvements with the “amazing” Lightning Process. “Now I can ride a bus alone, get groceries, even drive a car a short distance,” wrote Lee via Facebook Messenger.

Lee, who preferred not to use his full name, told me that other ME/CFS patients often insist that he couldn’t have had the illness in the first place. That bothers him, even though he understands why people might find his story hard to accept. “It’s a difficult thing to get your head around because it goes against all the assumptions we generally make about what we can and cannot influence our bodies to do,” he wrote. 

The websites of Lightning Process practitioners feature similar success stories. They do not highlight the accounts of people like Judith Murphy and others who report significant physical deterioration and emotional distress following a Lightning Process course. 

In 2013, Rachel Elliott’s teenage daughter contracted glandular fever, from which she never really recovered. She received an ME/CFS diagnosis, took a course of graded exercise therapy through the U.K.’s National Health Service and got worse, said Elliott in a Zoom call. (Elliott’s daughter agreed that her mother could share her story but preferred not to be named.)

Elliott told me that by late 2014 her daughter could barely get out of bed. At that point, she recalled, an NHS consultant suggested the Lightning Process. 

“It sounded very out-there to me,” said Elliott, an arts educator in north London. “We were just absolutely desperate, to be honest, and if an NHS consultant recommended it, what harm could it do?” 

Her daughter took the Lightning Process course in 2015. In the days immediately after, she thrived and resumed a very active social life. “It just seemed absolutely truly and utterly miraculous,” said Elliott. But, within weeks, the post-program boost began to wear off and her daughter’s health started to decline. No matter how hard her daughter tried to implement what she’d been taught, said Elliott, the exhaustion and other symptoms returned in force. 

“It really messed with her head, and she didn’t understand why after this effort, she was getting worse again,” said Elliott. 

Moreover, Elliott added, the Lightning Process practitioner appeared to blame her daughter. “He basically said he couldn’t help her anymore, she had some kind of block, and did I know what it was,” she said. “It was all about a flaw in her personality. That’s rubbish.” The events had an “extremely damaging” psychological impact on her daughter and caused bodily harm by encouraging her “to push herself hard and fast beyond safe physical limits,” Elliott said. 

Elliott said her daughter’s condition worsened in subsequent years and that she is now bedbound and fed by a tube. Her room is kept dark because the light disturbs her. She can usually communicate with her mother for a few minutes in the morning. Elliott recently wrote down on a slip of paper what her daughter asked her to convey about the Lightning Process: “If it works, it’s down to them, and if it fails it’s down to you. And if it fails, they just give up on you.”

In his email, Parker estimated that more than 25,000 people have taken the Lightning Process in the past 21 years and asserted that “the vast majority” of participants “achieve good and lasting change.” (I have reviewed the references Parker sent along with his answers, and they do not reasonably support this conclusion.) However, Parker wrote, “as we have always stated, with any intervention not everyone achieves the change they hope for.” 

Nonetheless, he said that reports that participants felt blamed for not getting better are “surprising and upsetting” to him, since “lack of blame” is a core concept of the program. “We are keen to understand more about why some people feel this way about it,” he wrote.

A grab-bag of approaches 

The Lightning Process, which is trademarked, piggybacks on the concept of neuroplasticity — the ability of our brains to adapt by generating new neurons and mapping new communications networks. The hypothetical and unwarranted leap is to maintain that people can exert conscious and effective control over this cerebral rewiring by using specialized techniques to ban unwanted thoughts or feelings and replace them with more desirable ones. Participants learn that they are “doing” rather than “having” their illness, and therefore can decide to stop “doing” it. 

The Lightning Process is one of a number of programs promoting relief from ME/CFS and other chronic illnesses through some form of theorized but unproven neurological housekeeping. The claims are often grandiose. The Dynamic Neural Retraining System, for example, promises “limbic rehabilitation” and teaches participants “how to change the function and structure of your brain.” The Gupta Program supposedly “triggers the body’s natural ability to heal” and bills itself as “the original & best neuroplasticity and holistic health program since 2001.” 

Overall, such programs include a grab-bag of possibly helpful strategies designed to interrupt the body’s fight-or-flight response, reduce stress and promote overall well-being. Among these strategies are philosophical teachings, breathing and meditation techniques, physical movement and mental exercises. Their websites feature books, videos and a range of courses and modules, along with testimonials from satisfied customers. 

Surveys of ME/CFS patients have found mixed results for the Lightning Process, with some respondents reporting improvements and others that they got worse. A challenge in interpreting such surveys, as well as anecdotal accounts of recovery, is the lack of a biological test for ME/CFS, which means that it is impossible to ensure that those said to have the illness actually have it. 

A standard definition used for years in the U.K. and elsewhere, for example, requires only one symptom — a period of unexplained fatigue lasting six months or more. However, cases of post-viral fatigue that will ultimately resolve on their own can sometimes extend for a year or more, making it hard to distinguish them from ME/CFS. Moreover, an unknown number of patients diagnosed with ME/CFS based on that definition or others might instead be experiencing fatigue due to depression, anxiety or related conditions. And some people might self-identify as having ME/CFS without having sought or received a clinical diagnosis at all. 

“What comes under the umbrella of ME/CFS is a very wide spectrum of clinical presentations and pathological or mental health pathways,” wrote the ME Association’s Charles Shepherd in an email. “My gut feeling is that the ones who do improve and remain so are the ones who have chronic fatigue or a chronic fatigue syndrome that is being driven by psychological and psychiatric factors.”

Ola Didrik Saugstad is a Norwegian pediatrician, neuroscientist and professor of medicine at both Oslo University Hospital and Northwestern University in Chicago. He says that the Lightning Process cannot “heal” patients with an organic illness like ME/CFS, but might “help some cope” with the condition. “The problem with the Lightning Process is that patients are instructed to repeat to themselves and everyone else that they are healed, they are healed, they are healed,” he told me, via email. “And then we see tragedies, patients collapsing.” 

Parker says that he finds it “saddening and surprising” for others to question people’s diagnoses after they get well. “I think it’s important to rely on the pre-LP diagnosis of medical experts and medical case histories that confirm the presence of these conditions of those who then go on to recover,” he wrote. 

When it comes to proving its claims to the satisfaction of regulators, the Lightning Process has not fared well. In 2012, the U.K.’s Advertising Standards Authority criticized Parker’s site for promoting the program’s supposed effectiveness not only for CFS/ME, but for multiple sclerosis, fibromyalgia, irritable bowel syndrome, food and chemical intolerances, addiction and other conditions. The agency noted that “the website was likely to mislead consumers regarding the benefits of the LP” and expressed concern that people might participate in the program instead of seeking medical care “from suitably qualified health professionals.” 

In response to a question about the ASA’s findings, Parker wrote that he believed a statement on the Lightning Process website about improvements among “people with CFS” had been justified, but that he had removed it after the advertising authority stepped in. He did not mention the ASA’s concerns about Lightning Process statements regarding multiple sclerosis and other conditions.

“Pseudostatistical jargon-filled waffle-fest”

More recently, Parker has stated that there is an increasing scientific base supporting the Lightning Process. But that scientific base has itself come under unflattering scrutiny.

In 2017, the positive results of a clinical trial of the Lightning Process for adolescents with ME/CFS, published in the influential journal Archives of Disease in Childhood, received widespread and credulous news coverage, with the exception of BuzzFeed, which offered an in-depth and much more skeptical view of the trial and the Lightning Process itself. Yet the researchers, a team from Bristol University, were later found to have violated core research principles designed to minimize the risk of biased responses. The journal ultimately posted a 3,000-word “correction and clarification” that undermined the credibility of the reported findings. (The correction and clarification resulted from my investigation of the trial and a subsequent complaint to the journal.) 

Last year, Parker and colleagues published a review of the existing literature on the Lightning Process, selecting 14 studies for assessment. In a blog post, Brian Hughes, a psychology professor at National University of Ireland Galway, noted that some of the included studies were not peer-reviewed and that other research was fraught with flaws. Although the review was published in Explore, a journal from a major academic publisher, Hughes described it as “a self-serving pseudostatistical jargon-filled waffle-fest, utterly untroubled by even the tiniest smidgen of scholarly objectivity.” (Hughes and I are colleagues and have recently co-authored a paper on ME/CFS.)

In November, the U.K.’s National Institute for Health and Care Excellence, which develops clinical guidelines for medical conditions, issued a draft of new recommendations for ME/CFS after a three-year process of development. The draft specifically recommended against “therapies derived from osteopathy, life coaching and neurolinguistic programming (for example, the Lightning Process).” The agency plans to issue a final version of the guidance in August, after assessing public comment. 

The Lightning Process debate is now roiling Norway, where it has gained visibility through the efforts of committed proponents. Researchers are seeking to launch a clinical trial for newly diagnosed ME/CFS patients. In December, Leif Edward Ottesen Kennair, the psychology professor at Norwegian University of Science and Technology overseeing the research, told the science website forskning.no that it is “a completely normal study, on a par with other studies we do in the field of psychology.” 

Yet critics have raised serious methodological and ethical concerns. Among the objections are that the study lacks an acceptable control group, relies on subjective rather than objective assessments, overlooks potential harms, is designed in a way likely to generate biased results, and involves the use of public resources to test a commercial product. The investigators have defended the structure and conduct of the proposed study, which received regional approval last fall. A federal ethics committee is expected to release its decision on the matter this month.

The issue has played out in a spate of news articles and opinion pieces — both for and against — in Norwegian media. In January, Camara Lundestat Joof, a political columnist at the popular tabloid Dagbladet, wrote about her younger sister’s traumatic experience years before with the Lightning Process, after she developed ME/CFS following glandular fever as a teenager. 

Right after taking the program, wrote Joof in her column, her sister declared herself to be “bubbling over with energy,” ramped up her activities, and adopted the distinctive Lightning Process language and mindset.

“When I asked how her symptoms were, such as the acute muscle pain, she replied that she did not ‘do’ muscle pain anymore, because her symptoms were not something she had, it was something she did, and by reformulating herself she could also take responsibility for them,” wrote Joof. But her sister couldn’t sustain the pace and soon crashed badly. Years later, she still suffers from ME/CFS. (Last summer, Dagbladet published a letter I wrote about the issue.)

Like Joof’s sister, Judith Murphy, the British woman who took the course in 2016, did her best after the training to keep up and stay active — but her condition declined anyway. In the months leading up to the crash that resulted in a hospital stay, she appealed to her trainer for support, she said. After a while, the trainer stopped responding.

“She just ended up ignoring me,” said Murphy. 

When the course began, the trainer described the Lightning Process as if it offered “an absolute guarantee” of recovery, Murphy recalled. But, in the end, she felt she’d been taken advantage of. “It’s very deceptive and it’s preying on weak, vulnerable, desperate people who will do anything to get better,” she said.

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The following month, when Covid-19 began to ravage his home city of Qom, he had an immediate alternative remedy. “Before going to sleep, put a cotton ball soaked in violet oil into your anus,” he told his 200,000 Telegram followers. A year on, he made international headlines by declaring that coronavirus vaccines would “make people gay.” 

Tabrizian is often referred to as the “father of Islamic medicine” by his followers and is known for pushing unproven remedies to believers, with no regard for scientific consensus. Thousands of shops in Iran sell herbal treatments. This has increased since the imposition of U.S. sanctions in 2012, and the country’s internet is full of start-ups advertising “Islamic” oils and potions for every kind of ailment, backed by religious influencers like Tabrizian.

Mehdi Sabili, an “Islamic medicine specialist” with over 60,000 followers on Instagram, runs one such company. In April, he urged Iranians to sip hot camel urine to ward off the virus. Another even more popular figure, with 185,000 followers, is Dr. Hossein Ravazadeh, a conspiracy theorist and promoter of Islamic medicine who considers much of modern medicine to be a “colonial conspiracy” dreamed up by Zionists and the British. His remedy for the virus is simpler than Sabili’s: drop bitter watermelon oil into your ears, morning and night, and “all obnoxious creatures” will be unable to enter the body, including Covid-19. 

Rather than being fringe figures, Ravazadeh, Sabili, Tabrizian and others like them are prominent and powerful anti-science voices in Iran. They regularly appear on state TV stations, and draw the support of members of parliament and religious authorities. 

“These people aren’t necessarily popular among the middle class or educated people, but they are being supported, they are being funded, and they have followers who believe what they’re saying and do whatever they say. It’s obviously harmful,” said Farhad Souzanchi, editor of the Farsi-language fact-checking site Fact Nameh. 

The Islamic alternative medicine industry creates a new class of religious “experts” within Iran, who claim miraculous results by prescribing unscientific treatments. The ideology they promote is upheld by some within religious factions of the regime. 

Iran has a history of traditional medicine that stretches back thousands of years. Some traditional remedies have been shown to be effective. For instance, modern clinical research suggests that saffron, a highly prized spice, may have mood-boosting properties that could be effective in helping people with mild to moderate depression.

In Iran, experts make a distinction between legitimate research into time-honored practices and the endorsement of pseudoscience that relies upon interpretations of Islamic scripture, obsolete medical theories, and the whims of contemporary religious figures. 

In recent decades, the revival of traditional Iranian medicine has been a top priority for the government, which has provided funding for universities to research age-old treatments. “The interest is political,” said Kiarash Aramesh, Director of the Bioethics Institute at Edinboro University of Pennsylvania. He explained that promoting Iranian traditional medicine will in turn “promote Iranian identity and the notion of self-reliance.” 

Traditional remedies are a source of national pride in many countries. In China, Xi Jinping is leading a similar drive to leverage traditional Chinese medicine to his advantage, believing it to be an effective soft power tool for the Communist party. Beijing is now proposing a ban on all criticism of such treatments, in order to stop scientists questioning their legitimacy.

Homayoun Kheyri, an Iranian-Australian biologist and journalist based in London,  believes there is a big difference between the use of complementary herbal remedies for common complaints, and religious figures advocating that unproven treatments be used as replacements for science-backed medicines during a pandemic. 

“You grow up with these kinds of traditions and you believe they work,” he said. “But you can’t sell it by ideology, whether Islamic or communist, or imperialist, or whatever.”

Still, scientists in Iran can be hesitant to push back against the clerical endorsement of such treatments. “It’s very dangerous to question Islamic texts — it’s risky. But whenever they get the chance, the scientific community object,” said Souzanchi. 

Last year, three doctors were reportedly sentenced to 60 lashes each after they criticized Tabrizian’s burning of the medical manual. But there was also disagreement among clerics: Grand Ayatollah Ja’far Sobhani stated that “insulting medical learning is against the spirit of Islam.” 

Iran has experienced a steady rejection of established science during the pandemic. In January, Supreme Leader Ayatollah Ali Khamenei banned the importation of vaccines from the U.S. and U.K., branding them “untrustworthy” and saying that it was “not unlikely they would want to contaminate other nations.” 

The Iranian regime may condone public advocacy of unproven treatments because it has few alternatives. Crippling sanctions mean that the country has struggled for years to get hold of essential medicines. During the coronavirus crisis, human rights groups said those same measures have impeded its ability to import medical equipment and vaccines. 

As a result, Iran’s black market for medical supplies is flourishing, and religious figures have been busily promoting alternative Covid-19 treatments. In March 2020, one cleric visited a ward full of coronavirus patients in northern Iran, swabbing what he called “perfume of the Prophet” beneath their noses. Even fewer resources are needed for the practice of so-called “energy healing,” which relies on “the invigorating power” of healing hands. 

“Iran is in a corner with no access to anything,” said Kheyri, the bioiogist in London. “If someone can say, ‘OK, well, we can provide energy without any medicine’ – people will try it.” 

In June 2020, Iran’s ministry of health announced that all students in medicine, dentistry and pharmacology should take Islamic or traditional medicine modules. 26 Iranian MPs have also presented a plan to create an official “Islamic-Iranian medicine organization,” overseen by the health ministry, that would give licenses to sellers prescribing alternative remedies. Last week, the head of Iran’s medical council, the country’s main doctors association, said that such plans were “playing with the nation’s reputation,” and would “undoubtedly cause disillusionment towards both Islam and Iran in scientific and international forums.”

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Alisa Vitti | Flo Living

By Caitlin Thompson

Alisa Vitti, the founder and CEO of the women’s lifestyle company Flo Living, often starts her public appearances with the same anecdote. Years ago, she was over 200 pounds, with terrible acne. She only had her period a few times a year. 

Vitti’s story concentrates on her diagnosis with polycystic ovarian syndrome, a condition related to an imbalance of reproductive hormones. Dissatisfied with standard treatment options, such as birth control pills, Vitti went in a different direction. She developed a diet regimen that she says restored her hormonal health. It involves eating certain foods at specific stages in the menstrual cycle, like asparagus during the ovulatory phase and kelp during the menstrual phase. 

Vitti has turned this plan into a booming business. She has written two books, has appeared on The Dr. Oz Show, spoken at SxSW and been profiled by the New York Times. Flo Living has over 122,000 Instagram followers and its founder regularly shares her philosophy with thousands of Facebook Live and YouTube viewers.

“If we can become fluent in the language of our biochemistry,” she said in a 2011 Ted Talk which has been viewed over 1.2 million times on YouTube, “then we can have access to an infinite source of energy, and vitality, and clarity, and unwavering purpose.” 

Vitti created — and trademarked — the concept of “cycle syncing,” in which individuals coordinate their diet and lifestyle with their menstrual phases. Flo Living’s membership programs cost almost $300 a year.

According to Dr. Jennifer Lincoln, an obstetrician and gynecologist in Portland, Oregon, healthy eating and exercise can decrease bloating and offer some benefit to women with polycystic ovarian syndrome, but cycle syncing? 

“She’s totally overcomplicating it,” she told me. “It’s not to the degree of, ‘This week you have to eat this and this week you have to eat that.’ That’s just silly.”

Flo Living also sells an array of supplements, which cost between $41 to $129 a month. 

“There’s no data to support supplements for the vast majority of people, unless you have a true nutrient deficiency,” Lincoln added. “To make it even more niche and specific to your cycle is predatory and not based on good data.” 

The website does carry a disclaimer about its products: “These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.”

Vitti wrote in a statement to Coda Story: “Flo Living is dedicated to creating programs and products that make navigating hormonal challenges easier for women. My work is supported and guided by respected research. Any assertions to the contrary are untrue.”

Joseph Mercola | Mercola.com 

By Masho Lomashvili

Before founding one the world’s biggest natural health websites, Dr. Joseph Mercola trained as an osteopath. In 1997, he created a blog where he began to outline his problems with the pharmaceutical industry. He advocated doctors spend more time with patients to help them heal and recommended a diet of unprocessed foods, along with plenty of exercise. Then he launched an online store and started to promote supplements, vitamins, protein powders and alternative treatments — including his own line of branded tanning beds to build up stores of vitamin D.

As countries around the world began to roll out Covid vaccines, Mercola was peddling misinformation in articles on Mercola.com with titles such as “Covid-19 ‘Vaccines’ May Destroy the Lives of Millions” and “How COVID-19 Vaccine Can Destroy Your Immune System.”

In October 2020, the Center for Countering Digital Hate infiltrated a meeting attended by Mercola, other alternative health entrepreneurs, and a number of conspiracy theorists. At the gathering, plans were drawn up to sow fear and distrust in vaccination campaigns using Facebook pages, WhatsApp groups, YouTube channels and Twitter and Instagram accounts. 

In addition to raising doubt and confusion about vaccines, Mercola offers his own alternative treatments for Covid-19. Earlier this month, the U.S. Food and Drug Administration instructed Mercola.com to stop selling products falsely described as preventing or treating the coronavirus.

“Failure to adequately correct any violations may result in legal action, including, without limitation, seizure and injunction.”

But Mercola’s biggest contribution to the anti-vaccination movement is financial. Over the past decade, he has given out a total of $4 million to the movement. That figure includes more than $2.9 million to the US-based National Vaccine Information Center, one of the most prominent U.S. anti-vaccine groups, which accounts for approximately 40% of the organization’s funding. 

Followers of Mercola view him as a dissident voice, bravely standing up to Big Pharma and a corrupt, profit-driven medical establishment. In reality, though, he has made a fortune from his products. According to the Washington Post, his net worth is “in excess of $100 million.” 

Mercola.com responded to a request for clarification on Mercola’s views on Covid-19 with a statement from an editor: “Dr. Mercola is a published author in peer reviewed medical literature demonstrating the clear link between vitamin D deficiency and severe cases of Covid-19. He will continue to express his professional opinions and defend his freedom of speech.”

Ty and Charlene Bollinger | The Truth About Cancer 

By Isobel Cockerell

While President Donald Trump told his supporters to march on the Capitol in Washington, D.C. on January 6, Ty and Charlene Bollinger were holding their own anti-science MAGA Freedom Rally, just a few minutes away. The event featured a number of speakers, including Mikki Willis, the producer of the infamous “Plandemic” conspiracy documentary, prominent anti-vaccine activist Del Bigtree, and disgraced former Trump aides Roger Stone and George Papadopoulos. 

This foray into politics is a recent development for the couple. Ty Bollinger, a former bodybuilder, and his wife Charlene, an ex-model, live in a $1.5 million mansion in Tennessee and have, over the past 15 years, built an empire peddling unproven cancer treatments.  

They believe that chemotherapy is “poison.” Their YouTube channel — which has amassed more than 22 million views — features numerous videos in which they speak to people who treat cancer with everything from essential oils, vitamin C injections and juicing to something called vibrational therapy, which supposedly uses “electric frequencies” and “positive energy” to target tumor cells. 

A recent post on their website, titled “30+ Natural Alternatives to Consider Before Chemotherapy,” states that “conventional doctors create a false sense of urgency” and suggests that readers experiment with coffee enemas and pseudoscientific ozone therapy before seeking hospital treatment. 

When asked about the moral implications of advising people not to undergo chemotherapy, the Bollingers responded that they “have never told people not to do chemo.”

“Anyone with cancer is vulnerable to snake-oil. Although survival rates have never been better, cancer is still a frightening word,” said David Robert Grimes, an Irish cancer researcher and campaigner against medical misinformation. “In those circumstances, even the most sober-headed realist can be taken in by those who promise miraculous cures with no side-effects.” 

In response to a request for comment, the Bollingers told Coda Story in an emailed statement: “We are not ‘anti-science’ at all. That’s a pejorative term that is used to discredit someone’s position without really saying anything or giving details about why the position is wrong. The truth is we are pro-science and pro-choice when it comes to cancer treatments and vaccines, so the ‘anti-science’ allegation is totally false.” In the same statement, the Bollingers also confirmed that they didn’t think the pandemic was real. 

Their online store — which features the headline “Cancer does not have to be a death sentence” — sells a variety of products, including turmeric and hemp extracts, a $2,495 “hydrogen water” machine and an infrared sauna for $949. Customers can also buy DVD box sets of Ty Bollinger’s documentary series for $497 and one titled “The Truth About Pet Cancer” for $149. 

When asked to respond to suggestions that they are taking advantage of sick and vulnerable people for profit, the Bollingers said: “We give free DVDs and books to anyone who asks for them. We are trying to help them, not prey on them.”

Michael Kelly | Praesidium Life

By Mariam Kiparoidze

Spurred on by a recent boom in conspiracy theories that link 5G communications technology to a host of medical conditions, numerous devices are being sold online to “protect” individuals from the allegedly detrimental effects of electromagnetic radiation. Examples range from vastly overpriced USB sticks to wristbands and hats. Now, the New Zealand-based naturopath Michael Kelly is planning to add a new nutritional supplement to the list. 

“Coming Soon. Praesidium — the natural solution to electromagnetic radiation,” says the homepage of the supplement Praesidium, under a photograph of a black bottle with the product’s logo and the words “Swiss Made” printed on it.

There is broad consensus among scientists that the health risks of 5G are, at worst, negligible. However, Kelly has a record of questionable scientific judgement. He runs a health and beauty clinic called The Health Centre, in Auckland, which advocates fighting cancer with immunotherapy and a ketogenic diet “to starve” tumors. He is also chairman of the populist political party Advance New Zealand, which came under fire for spreading misinformation about mandatory vaccines throughout its election campaigning last year. He co-founded the company Praesidium Life last year with former joint party leader Jami-Lee Ross. 

Kelly is also involved in an associated website named Natural Solutions, which hawks a range of products that supposedly offer natural solutions to serious medical conditions. Among them is the protein GcMAF, a purported miracle cure for cancer, HIV and autism that is not licensed for medical use in a number of countries, including the U.K. and the United States.

Like several of the products sold by Natural Solutions, Praesidium was developed by Dr. Marco Ruggiero, an Italian microbiologist who in the course of his career has promoted a variety of pseudoscientific theories, including that AIDS is not linked to HIV infection. He was also behind another widely derided supplement, marketed under the name Immortalis, which promised to extend life to an “unimaginable” length. 

Kelly’s company, Natural Solutions, did not respond to repeated requests for comment about his businesses and the science behind Praesidium.

Oleg Epstein | Materia Medica Holding

By Katia Patin

In nearly every Russian pharmacy you can find at least a few treatments manufactured by Materia Medica Holding. Founded in the early 1990s by Oleg Epstein, the company prides itself on being the first to mass produce homeopathic remedies domestically. From supposedly antiviral pills to purported cures for alcoholism — and even a new “treatment” in development for HIV — Materia Medica has it covered.

However, most of its products have few active ingredients and some are simply sugar pills, according to biologist Aleksander Panchin who sits on the Russian Academy of Science’s commission to fight fake science. Founded in 1999 to expose pseudoscience, the commission also gives out annual “anti-awards,” which name and shame individuals and organizations promoting unscientific research or treatments. Epstein is a three-time winner.

Epstein, however, is also a member of the Russian Academy of Sciences. Nominated in 2015, he has held on to his status despite the academy writing in a memorandum that the theoretical basis for many of his treatments — a concept he has referred to as “released activity” — is pseudoscience. The anti-science commission has no legislative powers, so Epstein’s pills are still officially registered as medicine by the Ministry of Health. In 2018, members of the commission named Materia Medica “the most harmful fake science project in recent years.” Epstein took his colleagues at the Academy to court, suing for defamation which ended in a settlement.

“Released activity” involves the use of highly diluted substances. Panchin has described Epstein’s supposedly “new” methods as a “rebranding” of homeopathy, which relies on similar principles. Still, Russian state media outlets regularly run stories about Materia Medica’s research, with no mention of the Academy of Science’s statements.

Epstein was born in 1962 in Khabarovsk, a region in the Russian Far East. His father, Ilya Epstein, was the director of an addiction center and was known for treating alcohol-dependent individuals with hypnosis. Epstein studied pharmacology in Tomsk and dedicated most of his career to homeopathy. In 2005 he was awarded a prestigious Russian Federation’s prize in the field of science and technology. By 2016, Materia Medica was bringing in more than $120 million a year in revenue.

Today the company’s website states that it is working to “discover, develop and make available highly effective and safe drugs,” with a global presence from Turkmenistan to Myanmar to Mexico. 

Epstein and Materia Medica did not respond to repeated requests for comment.

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