Long Covid: A Medical Mystery and a Potential Scandal

Nothing about long Covid adds up.

Consider prevalence rates: How could one study find it affected 3.3 percent of the population of the UK but others an alarming 51 percent of South Americans and 86 percent of Egyptians? Or treatment methods: The BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise. But if you attended the third annual Long Covid International Conference in Boston—as I did, late last year—you’d think the BMJ was encouraging medical malpractice. During two days of presentations, the world’s leading scientific authorities brought up exercise only to warn against it. Cognitive behavioral therapy received just one mention: “not recommended.”

Then there’s the scientific progress, or lack thereof. Six years since the height of the pandemic, the scientific community remains baffled by long Covid. Researchers still don’t know why some people’s symptoms persist or worsen after the acute phase of SARS-CoV-2 infection has passed. Almost $2 billion and half a decade of international effort have yielded little more than hypotheses about micro blood clots and spike proteins and mitochondrial dysfunction. There isn’t a single approved pharmaceutical treatment, not even a test to verify the presence of the illness.

All of this is very strange. Stranger still are patients’ stories of astonishing recoveries from severe long Covid, achieved entirely outside mainstream medicine. The stories are connected to a growing community of doctors, therapists, and self-styled coaches who insist the riddle of long Covid has been solved. Like so many health gurus, they offer a solution that depends, in part, on your faith in the process. The solution also works for a remarkable variety of ailments—classic red flags for “holistic” pseudoscience and medical charlatanry. If the stories are to be believed, they represent a neglected approach that demands urgent attention. If not, a colossal medical scandal is operating openly, exploiting sick people desperate for answers and relief.

It’s the job of the scientific community to solve mysteries like this one. Doing that job effectively, however, has two basic conditions: Researchers must know what they are studying, and they must be free to study it impartially. In the case of long Covid, neither of these conditions has been met, and patients are suffering the consequences.

One of those patients is a 37-year-old man I’ll call Andrew Larson, who came down with a bad case of Covid-19 in late 2023. After a week in bed, he recovered enough to begin working again. But a month later he noticed something was seriously wrong. Mild exertion like a short walk left his brain foggy and his body exhausted. Larson pushed through until June 2024, when he did some construction work around the house. The exertion was too much. His body began to shut down, and two weeks later Larson was bedbound.

Because so little is known about long Covid, sufferers are often dismissed by providers or passed from one skeptical specialist to the next. Symptoms vary dramatically in type and severity, which means one person might experience mild sleep issues and fatigue while another could become completely incapacitated. In those severe cases, it’s not uncommon for patients to end up in the psych ward. A privileged few land at dedicated clinics, but empathetic doctors can do little more than treat individual symptoms and hope for improvement.

Larson made his way to such a clinic, but he didn’t improve. By late 2024 and into 2025, the once-fit father had been lying motionless and mute in a darkened bedroom for months, pallid and emaciated, unclipped nails like claws, sucking pureed food from a syringe, dependent on a bedpan. Any exertion, even chewing or talking, meant waves of excruciating pain and days of bone-deep exhaustion.

What energy Larson had went into experimenting with treatments discussed in online support groups and Reddit threads: anticoagulants, antivirals, hydrophilic bile acid, a fortune’s worth of supplements, low-dose naltrexone. The last produced marginal improvements—“If I hadn’t started LDN, I might have taken my life,” he told me—but he still couldn’t move or mumble more than a few words.

Medical tests mocked him: normal, normal, normal. To qualify for disability, he traveled hours to a doctor willing to document his deteriorated state. Local physicians had dismissed him, like the neurologist who suggested he was “malingering.” Almost unbelievably, they worked at the same hospital where he, Andrew Larson, PhD, had been doing research just a couple of years earlier. “I’m in an online group with another 20 medical professionals that have long Covid, and everybody has the same experience,” Larson said. “When you cross the line of being a patient, you’re a patient. They couldn’t care less about your credentials.” (His insurance company has been endlessly skeptical, at one point visiting Larson’s home to confirm his ill health, and he requested anonymity for fear of losing coverage. Some identifying details have been changed.)

His wife, also a medical professional, became frantic. She thought Larson must be mentally ill—despite clear physical symptoms like inflammatory arthritis—and urged him to try antidepressants. He refused. Nevertheless, she continued to seek out alternative approaches and eventually secured a Zoom appointment with an unusual doctor she found online.

Becca Kennedy was the former lead of a multistate long Covid specialty group for Kaiser Permanente. She had met hundreds of patients with similar symptoms and stories. “People are really suffering,” Kennedy said. “Their symptoms are real. But if we want to help them, we need to understand the source of their suffering.”

Kennedy can barely contain her fury when she discusses mainstream theories of long Covid. She talks about patients who blew their savings on unevidenced blood-washing treatments because they believed the problem was micro blood clots. (Once a popular theory, it has now been replaced by other hypotheses.) She accuses scientists and clinicians who champion biomedical explanations of relying on shoddy, ambiguous research. “It’s poorly done studies that are really small,” she said. “And patients will be like, ‘Oh, well, this is micro blood clots and this is viral particles.’”

Kennedy has a different—and far more controversial—theory. She believes long Covid belongs to a family of chronic conditions that occur when the brain gets stuck in a feedback loop of fight or flight. Pain and fatigue signals, which should play a protective role—pain warns of structural damage, fatigue warns of overexertion—instead go haywire, like a broken smoke alarm. The result is a cascade of symptoms she attributes to nervous system dysfunction. The solution, she argues, is retraining the brain to break the loop. “It’s about how we are designed, our survival brains,” Kennedy said. “And now we have the neuroscience to understand these symptoms. I’m not saying it’s all in their head. I’m not saying it’s their fault.”

Kennedy is a member of the Association for the Treatment of Neuroplastic Symptoms, which is dedicated to spreading the theory that many chronic conditions can be resolved with specialized therapeutic techniques that target the brain. They lean heavily on the power of “neuroplasticity,” a very general term for the brain’s ability to change structurally and functionally. Howard Schubiner, one of the founders of ATNS and Kennedy’s mentor, has been using brain retraining for years, treating everything from back pain to migraines to, now, long Covid. “Doctors don’t understand psychology,” Schubiner said. “They don’t understand neuroscience. Medicine is stuck in a biomedical model.”

Kennedy and Schubiner use a combination of trauma therapy, emotional awareness and expression therapy, body awareness techniques, and cognitive exercises. They’ll ask patients to imagine themselves undertaking an arduous activity, like going up stairs, and attend to how their body reacts. When the imagined activity triggers symptoms, patients come to see the cause is in their nervous system—which, of course, includes the brain—not structural damage in the body. At Kaiser, Kennedy says she had too little time with patients to form the kind of relationship necessary for this approach. So she quit and started a private practice, which is how Larson’s wife discovered her and scheduled their first Zoom appointment.

I asked Claire Every, a patient who runs Long Covid Advocacy in the UK, what she thought of these approaches. “It’s quite soul-destroying as someone with severe long Covid to be told that it’s either your trauma, or your emotions, or your mental framing,” she said. “I think it’s an awful thing to do to somebody.” She and other advocates also worry that emphasis on psychological therapies will distract from biomedical research that could yield a breakthrough disease-targeting intervention.

Surveys show that “proving the realness” of long Covid is a top priority for sufferers—understandably, when newspapers run headlines claiming it’s fake. As long as clinicians, insurance companies, and the general public are dismissing people like Larson, even entertaining the plausibility of mind-body interventions can seem irresponsible and dangerous.

And that danger is especially acute right now, because it threatens a fragile paradigm shift around conditions like long Covid that’s been decades in the making.

Since at least the 19th century, when physicians described cases of “influenza exhaustion,” medical professionals have been documenting chronic illnesses that follow bacterial, viral, fungal, and parasitic infections. Now known as post-acute infection syndromes, severe cases are characterized by cognitive impairment, autonomic nervous system dysfunction, diffuse pain, and, crucially, debilitating crashes after overexertion, which go by the term “post-exertional malaise.” Categorizing these severe cases is a terminological minefield. But the most common designation, and the one used by the Centers for Disease Control and Prevention, is ME/CFS, which stands for “myalgic encephalitis / chronic fatigue syndrome.”

As with long Covid, ME/CFS has no clear biological explanation or diagnostic test, which means the medical community has struggled to offer care and empathy. Those with the condition knew what to expect when long Covid hit, because they’d seen it before: wisecracks dismissing ME/CFS as “yuppie flu” in the 1980s; scientific journals attributing their symptoms to epidemic hysteria. “People with these conditions get one of two labels in the popular imagination,” said Todd Davenport, an exercise physiologist at University of the Pacific who specializes in ME/CFS. “They get ‘lazy’ and they get ‘crazy.’”

In the old paradigm, the dominant authorities on ME/CFS were psychiatrists, like Michael Sharpe, an emeritus professor at Oxford, and Simon Wessely, former president of the prestigious Royal Society of Medicine. Their theory was straightforward: Sick people get deconditioned from lack of physical activity. When they try to go back to their normal lives, some experience unusual fatigue, because their bodies aren’t fully recovered. A subset of people misperceive this fatigue as ongoing infection or tissue damage, leading to a vicious cycle of distress, aversion to activity, and increased deconditioning. In essence, patients cursed themselves by believing their symptoms had a strictly biological cause. The stronger the belief, the worse the curse. “Poor prognosis,” Wessely explained, “is associated with holding very firm convictions of an exclusively physical origin to symptoms.”

If you accept this theory, the right treatments follow naturally: cognitive behavioral therapy to correct the mistaken beliefs, and exercise for the physical deconditioning. Sharpe and other colleagues eventually secured £5 million to evaluate those treatments in a study known as the PACE trial, which Wessely advised on. Published in The Lancet in 2011, it was easily the largest study ever of ME/CFS. The authors took the positive results as confirmation of their theories. “For those who appreciate these things, the trial is a thing of beauty,” Wessely wrote. “We now have two treatments that we can recommend with confidence to our patients.”

Among patients and advocacy organizations, the reaction was uniformly negative. A scathing letter to The Lancet from the ME Association’s medical adviser put it bluntly: “The patient community has expressed both anger and despair.” The association surveyed patients and found that 74 percent said exercise therapy made them sicker. ME Action, another advocacy organization, collected 10,000 signatures for a petition demanding the study be retracted.

One of the study’s most influential critics was David Tuller, a journalist and lecturer at the UC Berkeley Center for Global Public Health. A veteran of the HIV/AIDS crisis, Tuller had shifted his attention to ME/CFS, where he saw something akin to HIV denialism. “It was designed to ratify what they were already claiming,” Tuller said of the PACE trial. “It meets every single definition you can think of for research misconduct to a degree.” Tuller also collected harsh comments from physicians and scientists: “shocked that The Lancet published it,” “blatant methodological lapses,” “the height of clinical trial amateurism.” (Tuller noted to me that his position at Berkeley is supported by crowdfunded donations from patients and patient advocates.)

In the ME/CFS community, Wessely and Sharpe became talismanic symbols of medical science gone wrong. Their every statement was subject to intense scrutiny. The Guardian reported on a “campaign of intimidation, attacks, and death threats.” Wessely was accused of, among other things, throwing a sick boy into a pool to see if he would sink or swim. (Wessely denies this allegation, and many others, on his personal webpage.)

Over time, the influence of the PACE trial began to fade. Although The Lancet never retracted it, major medical organizations dropped recommendations for cognitive behavioral therapy and exercise rehabilitation. The CDC’s overview of ME/CFS now opens with a decisive rejection of psychological factors: “ME/CFS is a biological illness.” In online support groups and patient communities, anything remotely associated with the trial became instantly suspect. Exercise was a threat, not a therapy. To suggest the mind had any role in causing or curing ME/CFS was to align yourself with monsters and malpractice.

Then the pandemic hit.

This time patient advocates were ready, and the zeitgeist was on their side. Prominent long Covid skeptics like Vinay Prasad, a former Trump appointee to the FDA, were already viewed with suspicion by the scientific mainstream for minimizing the risk of Covid-19 and highlighting the risk of the vaccine. Honoring “lived