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Some survivors of acute bouts of Covid-19 experience a range of persistent medical issues — some lasting for weeks, or even months — that include profound exhaustion, trouble thinking or remembering, muscle pain, headaches, and more. One survivor described it as feeling like she was “hit by a truck.”

Anthony Fauci, the country’s top infectious diseases expert, acknowledged this month that the symptoms in many of these unrecovered patients are “highly suggestive” of myalgic encephalomyelitis, the disabling illness also commonly called chronic fatigue syndrome or ME/CFS. “This is something we really need to seriously look at,” said Fauci.

Fauci’s observation, echoed by others, is vitally important, and not only because it provides a warning about the pandemic’s potentially devastating long-term health effects. By noting the possible connection between “post-Covid syndrome” and ME/CFS, Fauci has highlighted the long-neglected field of post-viral illness — a poorly understood phenomenon that likely holds important clues about the causes of, and treatments for, both conditions.

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In recent decades, researchers have documented persistent sequela among some people who had acute infections of diseases like SARS, West Nile virus, and the 2009 H1NI influenza virus. Why some people are vulnerable to these chronic symptoms isn’t known.

The name “myalgic encephalomyelitis” was coined in the 1950s after an outbreak in a London hospital of what appeared to be a viral illness with prolonged complications. No pathogen was identified as the cause. After an outbreak with similar features occurred in Lake Tahoe in the mid-1980s, a team led by the Centers for Disease Control and Prevention called it chronic fatigue syndrome — and the name became widely adopted.

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The CDC estimates that up to 2.5 million Americans have ME/CFS, although many remain undiagnosed. A significant minority are homebound, even bedbound. As with post-Covid syndrome, most people report that their illness began with an acute episode of infectious disease, often mononucleosis or the flu. Although studies have documented a range of neurologic, immunologic, metabolic, and other dysfunctions, no specific causes have been identified for ME/CFS and no pharmacological treatments have been developed for it.

The cardinal symptom is not fatigue per se, but a prolonged relapse of exhaustion, cognitive dysfunction, and other symptoms after a minimal amount of activity. This is generally called “post-exertional malaise.”

For decades, many people with ME/CFS have been dismissed by their doctors, employers, and even family members as experiencing exaggerated or psychosomatic ailments. Some people with post-Covid syndrome are also reporting they are being told that their troubling symptoms likely result from anxiety, depression, or post-traumatic stress.

According to an unproven and now widely questioned hypothesis that has long dominated the field of nonpharmacologic interventions for ME/CFS, symptoms are perpetuated by irrational fears of exertion. These “unhelpful” and “dysfunctional” beliefs are said to result in a downward spiral of deconditioning, muscle atrophy, excessive sleep, and depression. The purportedly curative treatments that emerged from this hypothesis were a course of psychotherapy or a regimen of increasing exercise.

These two rehabilitative approaches were tested in the high-profile PACE trial, conducted in the United Kingdom and funded by the government. Its results were published in the Lancet in 2011 and later in other journals. Whether in their papers or public statements, the researchers claimed that patients achieved “recovery” and got “back to normal” with the interventions — assertions that were widely disseminated by news organizations.

In the last few years, however, news articles and peer-reviewed studies have documented the trial’s many flaws and challenged its findings. In an open letter to the Lancet posted on the science site Virology Blog, more than 100 scientists and other experts cited the study’s “unacceptable methodological lapses” and requested an independent investigation. As a result of these and related developments, the argument that ME/CFS is perpetuated by psychological and behavioral factors that can be successfully treated with psychotherapy and exercise interventions has lost much of its currency in the scientific community.

Given the core symptom of post-exertional malaise, the recommendation for graded exercise is increasingly recognized as harmful, not helpful. According to multiple surveys, many ME/CFS patients report serious deterioration after a graded exercise approach.

After decades of neglect by federal research agencies, the National Institutes of Health has increased funding for biomedical research into ME/CFS, although the amount is still far from adequate. Attitudes toward the illness in the U.K. appear to be changing as well, with government agencies recently appropriating 3.2 million pounds for a genetics study called DecodeME. While less than the amount spent on the PACE trial, this investment still represents a major acknowledgement that the search for answers has switched gears. These welcome research efforts could also shed light on the pathophysiological processes involved in post-Covid syndrome.

In spite of the paucity of knowledge about this new syndrome related to Covid-19, British adherents of the unhelpful-beliefs-and-deconditioning hypothesis for ME/CFS have been advising patients with post-Covid symptoms to resume regular activities as soon as possible and to avoid resting too much — exactly the wrong-headed advice given for decades to legions of people with ME/CFS, leaving many worse off than before.

Had U.K. and U.S. medical authorities not been so invested for years in fruitless psychological and behavioral interventions for ME/CFS, perhaps they would have listened over the years when patients told them that exercise and psychotherapy did not get them “back to normal.” Perhaps they would have pursued essential biomedical research instead.

We may now be paying the price for this longstanding disregard, given our urgent need for robust information about the possible long-term consequences of a virus that has already infected millions of people around the world, an unknown number of whom will experience some form of post-Covid disability. Studies of these people are likely to yield significant insights into this viral illness as well as into ME/CFS.

But we would have been far better off in the first place had the medical and research establishments not spent years ignoring or distrusting the voices of patients suffering from a life-changing post-viral syndrome. Perhaps it is time they started listening.

David Tuller is a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. Members of the ME/CFS patient and advocacy community have generously donated to crowdfunding campaigns in support of Tuller’s position at Berkeley. Steven Lubet is a professor of law at Northwestern University’s Pritzker School of Law. He has been living with chronic fatigue syndrome since 2006.

  • Thank you for this oddly-comforting article. I am going through the post-Covid total lack of/loss of energy and dippy-headedness. While we are running batteries of tests on me, I am recognizing a tone creeping into my doctor’s voice during our conversations – that “maybe it’s in your head” tone we hear so much about.

    The overall dearth of knowledge about post viral effects is something that needs to be addressed, obviously, and now, please.

  • Thank you to the authors for writing this article. As a sufferer for more than 30 years after having a severe viral infection I am very pleased that medics are moving away from graded exercise as a therapy/cure. I wouldn’t wish this disease on anyone, (well maybe the authors of the PACE Trial since they’ve done so much harm) I hope research into the long term impact of Covid leads to a better understanding of CFS/ME leading to effective treatments.

  • For goodness sake of doctors would only recognise adrenal insufficiency and treat it properly! It is more than obvious that ME,CFS, post viral syndrome has enormous effects on the adrenals. I have suffered for years with all these symptoms, spent a vast amount of money on private doctors, gone to the NHS till I’m blue in the face and still no help to fix this condition. After years of research and tests the one thing that is obvious is low cortisol due to the stress of these symptoms. Problem being conventional doctors will not treat low adrenals until Addison’s. The knock on effects of low adrenals and low thyroid hormone especially in women are giving us dustbin diagnosis of Fibromyalgia, ME, CFS and all we are being offered is antidepressants and painkillers. It has to stop!

  • Thank you for this brilliant article. I’ve waited 25 years to read this!

  • Excellent article,we have to look more into CFS and likely is related to some sore of post viral infection that has become invincible.

  • Thank you for highlighting the similarities in the symptoms of ME and the post COVID-19 condition. Now that long-lasting symptoms are being experienced following a well-recognised infection, the relevant health authorities may begin to take notice. The likely causes of ME during outbreaks were never researched and the condition has suffered from a disgraceful neglect and denial which have been accompanied by the harmful phony treatments you describe.

    It would be excellent if some of the research focused on comparing biological markers in ME (a good start has already been made there) and post COVID. It would be a great start and hopefully this approach would also kickstart proper medical recognition of ME as well as helping both conditions.

    • What ME and post-Covid-19 have in common is the neglect. As diseases, they are quite different. Various outbreaks of ME have been researched quite thoroughly, starting with Wickman (1905). The cause has been known from the beginning and markers have been identified over the years. Research is mostly lacking with regard to treatment and prevention.

  • There needs to be a lot more research, generally, into the ‘innate’ immune system.

    I had post-viral fatigue about eight years ago and, since then, have what appears to be a very odd inflammatory disease. We know from my attempts to conceive children (successful, thankfully) that my NK cells are extremely aggressive, and my levels of inflammatory cytokines seem to drift upwards over time. Humira brings me out of flares and IVIG reduces inflammatory cytokine levels and improves my immune regulation.

    It’s not ME/CFS, as my most noticeable symptom is chronic low-grade fever, but I tend to experience joint pains, rashes, fatigue that isn’t improved by rest, vascular problems, and unusually high insulin levels for someone of my age and fitness levels (I had severe gestational diabetes in my last pregnancy despite no risk factors except age). I also suffer very unusual symptoms with mild viral infections. There’s been one common cold enter our household during lockdown and my thumb and big toe went sore and stiff, I ran a mild fever and developed a rash around my mouth, but had no actual respiratory symptoms.

    There’s obviously something clinically wrong with my innate immune system, but it doesn’t have a name. Although rare, my disease is life ruining when it flares, and there must be thousands more people like me out there. It would be nice to know what is wrong.

    • Should say ‘insulin resistance’, sorry.

      Also, my symptoms can be controlled by IVIG and Humira can stop flares within eight hours… so we know this thing is real (if anyone doubted it). However, it doesn’t have a name.

  • Thanks for highlighting the decades of medical neglect resulting from an unproven psychogenic hypothesis that’s caused immeasurable suffering and harm to so many ME patients, the majority of whom are women. Let’s hope that the current interest in Covid-19 and post-Covid syndrome helps to bring this neglect and prejudice to an end.

  • I lie in bed, in the dark, day after day.

    12 years ago, I got Glandular Fever. I never got better and I was diagnosed with Chronic Fatigue Syndrome.

    I listened to the so called experts who told to walk for 25 minutes every day. When I could no longer do this, I was told I wasn’t trying hard enough.

    Now I can’t leave the house and on some days I struggle to walk to the bathroom.

    • Vitamins D and K1 will do that. Many people nowadays have vitamin deficiencies.

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