By Dr. Anthony Komaroff
Will some people who get COVID-19 subsequently develop ME/CFS? After all, many people with ME/CFS say that their illness began with some kind of infection: “a virus,” “a flu,” “a bad cold.” When it started, their illness didn’t feel that different from similar illnesses in the past, so no tests were done to determine what kind of infection it was. Their doctors thought there was no need, since these minor infections typically get better. Only this one didn’t get better, and the cause of the initial illness remained a mystery.
Other times, there is no mystery; the initial infection is clearly diagnosed. It might be infectious mononucleosis (“mono”), or it might be Lyme disease. The mystery then becomes why, after the clearly diagnosed illness has been treated, does the person remain sick for months and years thereafter?
Sometimes, people who develop ME/CFS—after what appears to be an infection—seem to have been part of a larger epidemic. That is, within a narrow window of time, large numbers of people in the same geographic area become sick with an illness that seems like an infection and then develop ME/CFS. Often these initial “infectious-like” illnesses are not severe, i.e. not that different from common infections. So doctors say, “it’s just something going around,” and don’t order tests. But the illness doesn’t get better.
Many such epidemics have been reported, all around the world, over the past 70 years. Organizations like the U.S. Centers for Disease Control and Prevention (CDC) have studied these apparent epidemics but often have been unable to find the cause of the initial infection1-3.
Other epidemics of more severe, clearly diagnosed infectious diseases—like SARS4, West Nile Virus5, dengue6 and Ebola virus7—can be followed by ME/CFS or a very similar illness.
So, there is abundant evidence that ME/CFS can follow either an apparently infectious illnesses of uncertain cause, or a clearly diagnosed infectious illness—including illnesses causes by viruses, bacteria, and even certain parasites.
Perhaps the best study of whether ME/CFS can develop following an infectious illness is a study supported by the CDC but conducted in a small, isolated, rural town in Australia, a town where people rarely leave to travel elsewhere. The town had one hospital, one laboratory, and a small group of doctors, making it easy to identify virtually every case of an infection that might lead to ME/CFS—and to follow people to see if they did develop ME/CFS8.
In this study, 253 individuals who developed an infection with either Epstein-Barr virus (a DNA virus), Coxiella burnetti (intracellular bacterium), or Ross River virus (an RNA virus) were followed for the next year. The study found that ME/CFS developed in 11% of the people. The strongest predictor of a “post-infective fatigue syndrome” was the severity of the initial illness, as judged both by symptoms and by laboratory test abnormalities. In other words, objective and measurable biological abnormalities predicted who would develop ME/CFS. In contrast, people with a past history of psychiatric illness were not more likely to develop ME/CFS.
It is therefore entirely plausible that some cases of ME/CFS will develop in people who get COVID-19. It is important to conduct studies that follow people with COVID-19 for several years, even after they recover, to see whether ME/CFS or other long-term complications will develop.
1. Shelokov, A., Habel, K., Verder, E. & Welsh, W. Epidemic neuromyasthenia: an outbreak of poliomyelitislike illness in student nurses. N Engl J Med 257, 345-355 (1957).
2. Poskanzer, D.C. et al. Epidemic neuromyasthenia: an outbreak in Punta Gorda, Florida. N Engl J Med 257, 356-364 (1957).
3. Acheson, E.D. The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia. Am J Med 4, 569-595 (1959).
4. Moldofsky, H. & Patcai, J. Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC Neurol 11, 37 (2011).
5. Sejvar, J.J. et al. Neurocognitive and functional outcomes in persons recovering from West Nile virus illness. J Neuropsychol 2, 477-99 (2008).
6. Seet, R.C., Quek, A.M. & Lim, E.C. Post-infectious fatigue syndrome in dengue infection. J Clin Virol 38, 1-6 (2007).
7. Epstein, L., Wong, K.K., Kallen, A.J. & Uyeki, T.M. Post-Ebola signs and symptoms in U.S. survivors. N Engl J Med 373, 2483-4 (2015).
8. Hickie, I. et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ 333, 575-8 (2006).
Anthony Komaroff, MD
Editor in Chief, Harvard Health Letter
Anthony Komaroff is the Steven P. Simcox/Patrick A. Clifford/James H. Higby Professor of Medicine at Harvard Medical School, senior physician at Brigham and Women’s Hospital in Boston, and editor in chief of the Harvard Health Letter. He was director of the Division of General Medicine and Primary Care at Brigham and Women’s Hospital for 15 years, and is the founding editor of Journal Watch, a summary medical information newsletter for physicians published by the Massachusetts Medical Society/New England Journal of Medicine.
7 thoughts on “Will There Be a Post-COVID-19 Form of ME/CFS?”
Unfortunately there will be but they will be told it’s all in their head! But hopefully we ME’s will be there to support them and keep advocating for awareness, funding and support.
This is sort of a confession. I am surprised and disappointed in my own emotional reaction to the COVID-long-haulers. As a 32-year sufferer of ME/CFS whose illness has gotten much worse the last three years, I’ve served as a support group leader for many years and have shared the grief of several newcomers. It wasn’t easy. The anguish of each newcomer took me back to my own painful path of grief and acceptance in the early years. At that time, we didn’t give much thought to what triggering factor brought on each newcomer’s disease.
But with the advent of the long-haulers, something has changed. Yes, if a COVID-long-hauler comes to my group, I will offer compassion and understanding just as I have for every other newcomer. But only after I’ve had a chance to step out in the backyard and privately scream.
The scream is for two slightly different reasons, both related to the unfairness of it all: the unfairness that yet more people are being struck with this disease, and the unfairness that our disease was given so little credibility before this new group came along (present company excluded.) When the subject of long-haulers was brought up to those psychiatrists in England, they assured the interviewer that they would not be prescribing CBT and GET for this group because they are somehow different. The difference, of course, is that since these new patients had a diagnosable infection, it’s not so easy to pawn them off as psych cases, at least not yet. After the newcomers have been sick for a few years, I wouldn’t be surprised if Simon Weaselly and his ilk will be pushing those treatments on them, too. I read an interview with one long-hauler who was terrified that her disease might not be accepted because she contracted COVID at a time when tests were scarce, so she was never officially tested and diagnosed. That leaves her in the same boat as the rest of us: unable to “prove” the origin of her illness, and thus subject to all kinds of speculation.
I welcome the research that comes with this new group of patients. And my heart goes out to these patients for their suffering. But I will have to step outside and do that primal scream thing a few times before I get past my frustration over the treatment of “them” as somehow different from “us.” Only time will cause that differentiation to fade, and even then it will only be because the medical profession will eventually downgrade them to our level.
PS: My anger, resentment, and despair are reserved for this forum. When the newcomers show up, they will be given friendship, laughter, and the reassurance that life with ME/CFS is different but not awful. And I will privately hope that the research catches up with them before it DOES get awful.
Update: I am horrified to discover that even this new group is not being treated with respect by many in the medical community and in the general population. At first, it looked as if at least these terribly sick people would not be subject to the distrust and simplistic solutions that the ME/CFS community has had to endure. But from what I’m reading, the long-haulers are getting the same gaslighting that we did: If they aren’t recovered by now, the problem is in their heads. Or they just need to get off of their sofas and start exercising (which would only make things worse.) And, to make it worse, SSDI disability benefits are harder than ever to get, and many of these people don’t have documentation to “prove” the severity of their illness. (“The Atlantic” just ran a very good story about the long-haulers. It wasn’t pretty.) More lives are being devastated.
I’m past wanting to scream. Now I just want to cry. What kind of a world do we live in?
We have seen highly elevated antibodies to previous infections (like EBV for example) in post covid clients – is it possible this is the immune system trying everything or being overstimulated, or is it more likely just a genuine reactivation of those viruses – and either way what could be the mechanism?
Not surprising…all this news. Back in 1995 we did the first international study of long term patients ( those sick for . ten yrs or more) / We did it out of frustration because at that time none of our researchers wanted to know about long-sick patients and instead felt they could only trust data from newly discovered patients, diagnosed by themselves.. We presented the data at their medical conference that year and It was then published in first vol. of Journal of Chronic Fatigue Syndrome. Robert Fontanetta, a PWC from N.Y. supplied much of the financing and participated in project.. Lucy DeChene, a Math professor and PWC from MA, participated and wrote another article and Fred Friedberg, another professor from Ct, participated and wrote yet another. I also wrote an article which appeared in that first vol., of the Journal for CFS, “Coping over the Long Haul.”. We did the research together and agreed our names would appear on all articles and the key writer, would appear first..All are still available to see and have been cited in other work. Finally the world is catching up!!That’s good news for all of us.
Sincerely, Maggie McKenzie II, founder and first President of Ct. CFS Assoc. Inc. and Exec. officer for three yrs on The CFIDS Assoc. of America.Inc.,