SSome survivors of acute episodes of Covid-19 experience a variety of persistent medical problems, some lasting for weeks or even months, including deep exhaustion, difficulty thinking or remembering, muscle pain, headaches, and more. A survivor described it as the feeling that she was “hit by a truck.”
Anthony Fauci, the country’s leading infectious disease expert, acknowledged this month that the symptoms in many of these unrecovered patients are “highly suggestive” of myalgic encephalomyelitis, the disabling disease also commonly called chronic fatigue syndrome or ME / CFS. “This is something that we really need to seriously consider,” Fauci said.
Fauci’s observation, echoed by others, is of vital importance, and not just because it provides a warning about the potentially devastating long-term health effects of the pandemic. Noting the possible connection between “post-Covid syndrome” and ME / CFS, Fauci has highlighted the long-neglected field of post-viral disease, a little-known phenomenon that likely has important clues to the causes. and treatments for both conditions
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In recent decades, researchers have documented persistent sequelae among some people who had acute infections from diseases such as SARS, West Nile virus, and 2009 H1NI influenza virus. It is unknown why some people are vulnerable to these symptoms. chronic.
The name “myalgic encephalomyelitis” was coined in the 1950s after an outbreak at a London hospital of what appeared to be a viral disease with prolonged complications. No pathogen was identified as the cause. After an outbreak with similar characteristics 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 was 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 confined to their home, even to bed. As with post-Covid syndrome, most people report that their illness started with an acute episode of infectious disease, often mononucleosis or the flu. Although studies have documented a variety of neurological, immunological, metabolic, and other dysfunctions, no specific causes for ME / CFS have been identified 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-effort discomfort.”
For decades, many people with ME / CFS have been fired by their doctors, employers, and even family members for experiencing exaggerated or psychosomatic ailments. Some people with post-Covid syndrome also report that their troublesome symptoms are likely to be the result of anxiety, depression, or post-traumatic stress.
According to an untested and now widely contested hypothesis that has long dominated the field of non-pharmacological interventions for ME / CFS, symptoms are perpetuated by irrational fears of exertion. These “useless” and “dysfunctional” beliefs are said to result in a downward spiral of deconditioning, muscle atrophy, excessive sleep, and depression. The alleged curative treatments that emerged from this hypothesis were a psychotherapy course or an increasing exercise regimen.
These two rehabilitation approaches were tested in the high profile PACE trial, conducted in the UK and funded by the government. Their results were published in The Lancet in 2011 and later in other journals, either in their documents or public statements, the researchers claimed that patients achieved “recovery” and “returned to normal” with the interventions, widely publicized claims. by the news. organizations.
However, in recent years, news articles and peer-reviewed studies have documented the many flaws of the trial and have questioned its findings. In an open letter to The Lancet published on the scientific site Virology Blog, more than 100 scientists and other experts cited the study’s “unacceptable methodological flaws” and called for independent research. As a result of these and other 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 relevance in the scientific community.
Given the core symptom of post-stress discomfort, the recommendation for gradual exercise is increasingly recognized as harmful, not helpful. According to multiple surveys, many ME / CFS patients report severe deterioration after a gradual exercise approach.
After decades of negligence by federal research agencies, the National Institutes of Health has increased funding for biomedical research in ME / CFS, although the amount is still far from adequate. Attitudes towards the disease in the UK also appear to be changing, and government agencies recently allocated £ 3.2m for a genetic study called DecodeME. While less than the amount spent on the PACE test, this investment still represents an important recognition that the search for answers has shifted. These welcome research efforts could also shed light on the pathophysiological processes involved in post-Covid syndrome.
Despite a paucity of knowledge about this new Covid-19-related syndrome, British adherents of the useless belief and deconditioning hypothesis for ME / CFS have been recommending that patients with post-Covid symptoms resume their regular activities as soon as possible. possible. And to avoid getting too much rest: exactly the wrong advice given for decades to legions of people with ME / CFS, leaving many in a worse situation than before.
If the UK and US medical authorities had not been so interested for years in unsuccessful 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 return them “to normal.” Perhaps they would have pursued essential biomedical research instead.
We may now be paying the price for this long-standing omission, given our urgent need for sound information about the possible long-term consequences of a virus that has already infected millions of people around the world, an unknown number of which will experience some form of post-Covid disability. Studies of these people are likely to yield significant information about this viral disease and ME / CFS.
But in the first place, we would have been much better off if the medical and research establishments had not spent years ignoring or mistrusting the voices of patients suffering from a life-changing post-viral syndrome. Maybe it’s time for them to start listening.
David Tuller is a principal investigator in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. Members of the ME / CFS patient community and advocates have generously donated to crowdfunding campaigns in support of Tuller’s position in Berkeley. Steven Lubet is a professor of law at Northwestern University Pritzker Law School. He lives with chronic fatigue syndrome since 2006.
