By David Tuller and Steven Lubet
July 21, 2020
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.
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.
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 advisingpatients 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.