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 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.
I had COVID virus about 8 weeks ago. I have the confusion and fatigue symptoms which affected my daily life. Doctor doesn’t have answers and CDC doesn’t give answers. I want to be aware of any research regarding this syndrome. I feel very alone.
Thank you so much for this amazing article from Germany!
ME/CFS has destroyed my life. I had a virus when I was 22 and never recovered. 17 years and counting.
Still hoping for research and recognition for me and 17–30 million people with ME worldwide, including children.
Michael,
Yes, but have you felt as if you’ve been hit by a truck every day for over 3 decades? I’d much rather have something treatable – or even curable – than feel this way every day for 30+ years!
If people who are Covid Long Haulers are going to feel this way every day for the rest of their lives, and are going to have to give up life as they used to know it (including jobs, time with other people, ability to contribute to their communities, and much, much more) we need to have some compassion and help them in any way we can.
Thank you for your very relevant article. As someone who suffered from 5 years of Chronic Fatigue Syndrome/ME decades ago, I also noticed the striking similarities regarding patients’ descriptions of the post-COVID syndrome. It has been very disappointing to see how little funding and research has been done over the decades. I hope post-viral syndromes finally get the attention and research they deserve given how many lives are devastated by them.
Would love to pursue this with you as a health care professional to discuss new directions for investigation requiring we dare to take on the taboo or utilizing small doses of a variety well known and exceptionally useful controlled substances and hormones replacing natural endogenous substances normally produced in the body that become depleted during and after events challenging them depleting the body’s natural reserves. We need to return to basic science and complete medical workups determining levels of substances needed for quality of life rather than mere existence. As a health care professional who like you has experienced life altering symptoms our now corrupt and greed based corporate health care advocates minimizing diagnostics and selling out to all opportunities to blame everything on serotonin, dopamine snd other neurotransmitters then “turfing” patients to PT, psych, and CBT approaches in hopes they will be in the < 30% who may benefit from anti depressants, convulsants, psychotics or NSAIDS that are among the most toxic and expensive meds relentlessly produced and marketed as a panacea for all. All when we KNOW that as has just been proven and KNOWN by our old great mentors for years, that drugs like dexamethasone and other steroids used in small or appropriate dosages are life saving in many circumstances from infection and inflammatory reduction to acute treatment of suicidal depression in ERs when in the hands of practitioners who learned to use them BEFORE medical education made students terrified of potential side effects when not properly used. The same is true for LOW dose opiates recognized 100s of years ago as immediate treatment for melancholy known now as depression responsible for loss of quality of life and productivity but also for incredible profits to the drug companies that market variations of the same useless products year afte year ALL based on the assumption all problems can be attributed to deficiencies in the same neurotransmitters that SHOULD be addressed by avoiding actual testing for them and using chemical manipulation rather than small doses or adjustments with actual replacement therapy. Support for my approach is the Life saving efficacy of DEXAMETHASONE in treating Covid cases. Broad minded critically thinking veterinarians have known for years that dex can reduce fluid accumulation and magnitude of inflammation to levels that antibiotics can be useful while young ignorant poorly education medical professionals have been taught only to fear these meds and the opiates and others ENDOGENOUS substances that quickly become depleted in a body under stress. The key is often supporting the body er-supplying it with substances needed for it to return to the homeostasis required for “normal” life. Some folks have or develop a deficiency in endogenous substances and we’re happy to supplement patients with insulin, sometimes estrogen or testosterone AFTER establishing a deficiency based on well established symptoms
Definitely attributed to deficiencies or excess. However medicine REFUSES to make the same assumptions and supplement patients with steroids, opiates or hormones despite great track records with efficacy all by marketing their “addictive” potential in some as they line corporations pockets with the volumes of products known to be typically useless with the worst potential for toxicity and costs.
I know from personaI experience that SMALL and sometimes simply brief courses of medications like dexamethasone, testosterone, methylphenidate, and certain opiates can RE-SUPPLY one who’s endogenous supplies have been temporarily depleted OR ability to produce or keep up with demand impaired or disabled. In some cases genetics have caused one to require higher levels or complete supplementation and the goal is return to PHYSIOLOGICAL LEVELS ! Not the excesses the “average “ physician has never learned to fear.
My goal is to create centers for or inspire research first developing better methods of testing patients for their normal levels using clin path and imaging modalities. With this we must teach students to THINK and become clinicians not parrots and computers. We have to end the waiting rooms of pale, overweight, thin haired, cold patients being denied thyroid replacement based on a TSH ! So many clinically low thyroid but not by our ridiculous numbers denying not only what they need for proper metabolism but also to adjust for meds, diets or genetics giving them a “normal” number not recognized by textbooks. One large academic center runs a mood disorder clinic run by a Pharm D out of its prominent epilepsy center This wonderful astute clinician quietly advocates supplementing T3, cytomel, friday-iodithyronine for All patients on AEDs, SSRI’s et al. Medicine erroneously assumes ALL patients are capable of producing the very hormones and neurotransmitter we’ve established are critical for health and well being while arrogantly refusing to establish levels and prescribing meds requiring the body convert into usable end products
Bottom line is that after years of experience on all sides of the stethoscope I’ve learned I’m one of those rare patients with many genetic challenges and with the help and support of a few excellent open minded supportive therapists, an amazing provider practicing “Pilates based physical therapy “ (a UCB grad) and ongoing need for small doses of methylphenidate, steroids, targeted benzo’s prn and hormones all on the DEA’s top ten hit list, im able to live a happy productive life but in daily fear. Why? Because our government is actively targeting these talented, educated and open minded health care professionals being actively targeted and forced into choices to continue to provide excellent care for patients like you diagnosed with everything from fibromyalgia, to post viral syndromes all denied they small doses of meds that simply replenish or directly cause secretion of the dopamine, cortisol, T3, testosterone and endogenous opioids they desperately need to lead productive active lives! I once had an excellent therapist In mind/body medicine who was adamantly opposed to all psychiatric meds. A good friend s d psychiatrist finally made her realize that CBT therapy was often impossible in patients whose endogenous neuro transmitters were not there. Only WHEN the body got what it needed could the mind be helped. Sometimes patients need Ritalin or dex to get out of bed and start the diet and exercise program that will help abate psychic and physical pain and reboot the body’s physiology to get it on track again. Some situations are temporary and others require permanent help. All I know is the answers are NOT where we’ve been stuck for too long. We must test for levels and body’s ability to produce endogenous substances each individual requires.
I am very concerned how the medical care will be address for the millions who have tested positive and those who had severe symptoms, and may became disabled. Doctors need to listen to these patients because post-covid syndrome is real. How its going to be addressed is a million dollar question. The way our medical care system is runned this is not news. The best for all.