From 2014 to 2018, DePaul University psychologist Leonard Jason and colleagues collected personal information and blood samples from more than 4,500 healthy college students. They followed the group as some students contracted mononucleosis and a small proportion of those subsequently developed chronic fatigue syndrome — the debilitating disease also called myalgic encephalomyelitis, or ME/CFS, that is frequently triggered by an acute viral illness.
As Jason and his team were analyzing data earlier this year — seeking patterns that might explain why some students remained healthy and others got sick and stayed sick — reports began emerging of troubling medical complaints lasting for weeks and months following cases of Covid-19. Some of these post-Covid symptoms, including profound exhaustion after exertion and deficits in memory and concentration, resembled those experienced by ME/CFS patients.
The researchers came to a quick realization: The extensive baseline data and biological materials they had gathered from thousands of students created a unique opportunity to investigate risk factors for developing acute and prolonged illness after infection with the novel coronavirus.
“We will be able to compare the biological and behavioral data of young adults’ experiences prior to the Covid-19 epidemic and during the Covid-19 epidemic,” noted Jason during a recent conference presentation about the research.
This kind of prospective research design, in which people are enrolled before falling ill, allows researchers to make robust comparisons between those who return to health and those who never recover. But such studies are expensive and can take years, and they are especially challenging to put together amid a fast-moving pandemic — which helps explain why so little is known about the reasons some people develop long-lasting health problems after a viral illness.
Despite this knowledge gap, post-viral symptoms, such as persistent aches and fatigue after a bout of influenza, are a common phenomenon. These symptoms usually — but not always — resolve on their own over weeks or months. Researchers studying other viral illnesses that emerged over the last two decades — SARS, West Nile virus, Ebola, the H1N1 flu pandemic of 2009 — have also reported that some patients suffered negative long-term health consequences.
“Chronic post-SARS is characterized by persistent fatigue, diffuse myalgia, weakness, depression, and nonrestorative sleep,” concluded the authors of a 2011 study that followed up SARS patients after the 2003 epidemic, which was caused by an earlier coronavirus.
When it comes to Covid-19, people with both severe and milder cases have reported continuing symptoms. Some studies of patients who had been hospitalized found that more than 70% reported continuing problems after the acute episode. In a survey of Covid-19 patients who did not require hospitalization, the Centers for Disease Control and Prevention reported that 35% had not returned to their “usual state of health” two to three weeks after a positive viral test.
In the U.S. and elsewhere, major research centers and medical organizations are now launching studies and registries of patients who have not recovered from Covid-19. To date, much of what is known about what has been called “long-Covid” comes from research led by patients themselves, often called “long-haulers.” In May, a research team from Body Politic, an online patient support community, released the results of a survey of 640 long-haulers, documenting a surprising array of symptoms.
Unlike prospective studies, which can follow participants for years, surveys provide a snapshot of information from a single slice of time. A major advantage is that they can incorporate recent developments and be conducted quickly, said Brooklyn, N.Y., artist Hannah Davis, who has a background in artificial intelligence and is a member of Body Politic’s research team. “We have the benefit of speed,” she said of the group, which disseminated a second and more expansive survey this week.
The new Body Politic survey includes questions about antibody tests, neurological symptoms, and mental health impacts, among other topics that long-haulers have been discussing and debating in online forums. “We just kind of observe what’s happening around us and ask questions based on the trends we start seeing,” said Davis.
Eric Rubenstein, an epidemiology professor at Boston University, is consulting with Body Politic on a proposed survey related to the disability needs of long-Covid patients. Surveys can be especially useful for generating hypotheses for further research and understanding patients’ concerns and priorities, he said. In contrast, prospective research like the DePaul study can provide valuable insights into potential disease mechanisms.
Rubenstein expects more studies of Covid-19 and long-Covid to piggyback on existing research cohorts that were established for other purposes. But the college student study is noteworthy, he said, because the researchers were already investigating another post-viral illness with potentially overlapping features. Given the parallels, he said, “they’ll have some measures that are useful for this topic.”
The similarities between symptoms experienced by ME/CFS patients and some long-haulers suggest that research into the processes driving one disease might provide insights into the other, say researchers. Other post-Covid symptoms appear related specifically to the lung scarring, cardiovascular damage, and other impacts of this particular viral infection.
Jason is among the country’s most respected and prolific ME/CFS researchers, having authored or co-authored dozens of papers on the issue. In the college student study, funded with $3 million from the National Institutes of Health, about 5% of the sample developed mononucleosis and 8% of those patients met diagnostic criteria for ME/CFS after six months, said Jason, although the findings are still unpublished. Some immunological markers were associated with developing ME/CFS, he noted, while psychological factors were not. The students were recruited from Northwestern University, where Jason’s co-investigator, Ben Katz, is a pediatrics professor.
Before the pandemic began, Jason and his colleagues had already received additional funding to conduct follow-up research on their thousands of study participants. Given the new circumstances, they have added questions about coronavirus infection, Covid-19, and post-Covid symptoms, and outreach has already begun. The research has a multiyear timeframe, but some of the data could be released in stages, he said.
“The bottom line is there might be characteristics of individuals that might be genetic or physiological or behavioral that in some ways predispose some people toward both getting an illness and then maybe not recovering from the illness,” said Jason.
We can only do so much to mitigate the spread for SARS-CoV-2, what we can a lot better by believing patients who are presenting with these symptoms. We’ve see this pattern of illness appear again and again following viral outbreaks. Unfortunately in the absence of a biomarker, there continues to be a tendency to psychologize this illness. Thank you Dr. Jason and David Tuller for keeping everyone clear on the facts.
I was convinced my illness onset 24 years ago was the result of a specific occupational exposure to pesticides. But in fairness I have always been exposed to chemicals. Early 20’s when I built boats on and off for 5 years. Then both pesticides I used myself and ones professionals put down on lawns I maintained from 23 to 37 when I permanently took ill. Both inside and outside of accordance with the labels of these materials. And I had hobbies like restoring cars, and working on engines and exposure to solvents and paints, and fumes from welders and what not. When I was a kid I was a bit of a firebug. Got some unique exposures there. List goes on and on. Did these exposures lead to my being disabled or did they not have anything to do with it??? It’s a $64,000 question. I did engage in some risky types of sexual behavior. I did get knocked on my ass by some fleeting type of illness a few months or years maybe before I got CFS. A year or two before my demise I took a strong course maybe 1000mg of some type of antibiotic that started with the prefix “bax” maybe. I was bed ridden the whole time I was on those! Then again during onset of CFS where I felt like I had the flu but had no temperature or other indicators other than being bed ridden. It just never went away. And I can’t be exposed to mold without getting deathly ill which is a huge clue that is to this day almost completely ignored by authorities. Because I can afford housing without mold I am somewhat functional. At least enough where I can take care of myself and watch others live their lives from the sidelines. And I always marvel at how much they accomplish. It is extremely depressing when I have so many things I want to do that in all reality I will never be able to do. But my suffering pails compared to what some with this horrible scourge have to endure.
Psychological stress can causally lead to elevated amounts of pro-inflammatory biomarkers and this can potentially influence physical health conditions. Also, another thing we need to consider is the nocebo effect. Just like powerful placebo effects, expectations of negative outcomes (that can be brought along by media reports, etc) can lead people to actually have them.
It was refreshing to read a study that states categorically that M.E./ CFS is NOT psychological. It is sad that some people find this fact hard to accept. I developed M.E. following the 2009 H1N1 outbreak. I was in the best mental/psychological shape possible and had never even heard of Post Viral Fatigue Syndrome, let alone M.E. / CFS.
Far from the nocebo effect, I was blissfully ignorant that anything was wrong initially. I thought that I was just a little unlucky in catching one bug after another (not unusual as I was a teacher) for the first 6 months.
While being severely affected by M.E. has not been easy, the worst part about it (& by far the most stressful) was the disbelief / constant questions about (non-existing) depression from medical professionals and senior management at work. Had I had a different illness such as cancer I would not have had to utilise precious energy resources in fighting to ‘prove’ I was physically ill.
I personally think it’s high time psychology & psychiatry professions got off the M.E. / CFS gravy train & stop stealing much needed research funding from medical professionals & scientists who have a much better chance of finding the causes, treatments & hopefully a cure for those of us who live with this every day.
There is a place for psychological therapy to support people who struggle to come to terms with long term physical illness, but the hijacking of a physical illness by mental health professionals is unforgivable. One only has to to look at the ghastly PACE trial fiasco (the least scientific study ever funded) to see the very real damage this has already done!
Recovering now from covid 19 , just finished Isolation for 14 days and had a clearance to return to work….still feeling very fatigued….did not have to be hospitalised .
I am so glad that Leonard Jason noted that immunological factors play a role in ME/CFS, not psychological ones.
Excellent reporting. Thank you.
Very good to hear that Dr Jason’s work will be expanded to include COVID-19. One would think given the potential millions who could be sick with post-covid19 syndrome and a percent that will go on to develop ME that NIH and the CDC would be throwing money at studies like this to save future generations billions in health costs and lost productivity.
This is a new area – it will be so useful to compare the 3 – who recovers, who gets and stays post-covid-19 syndrome, and who gets ME.
Most people who get ME have it for life. We’re underfunded and not tracked but research to date indicates about 5% recover, most often the newly diagnosed and children. It’s a much more severe disease than usually acknowledged, with the 25% mild cases functioning less than 50% of pre-disease (who can call that ‘mild’!); the 50% ‘moderate’ unable to work; an the 25% severe mostly homebound or bedbound, needing help with daily necessary activities, and the very severe often bedbound in darkened rooms being tubefed.
We need to prevent large numbers of people getting ME. NIH and CDC need to step up now and fund the necessary research with covid-19 patients to see who gets ME, hopefully discover the disease mechanism to prevent future cases and treat existing patients.
It’s good that Jason’s work (and Jason has long been investigating M.E./CFS) is taking longhaul COVID, post viral diseases seriously. Will the NIH and the CDC? Neither has taken M.E.– Myalgic Encephalomyelitis seriously, despite one million suffers with numbers exploding after 1980. While there are symptom overlaps with M.E there are also key differences, eg COVID related heart problems. I urge investigators to both look at possible similar pathophysiological pathways, but also in doing to keep in mind, as good researchers should that M.E might be a distinctive, quite separate disease. Thank you, Dr Tuller for your reporting on this complex subject.
I’d like to add to that the ME patients (CFS is an extremely misleading name for a neuro immune disease), rarely recover after a few months or even a few years. The majority such as myself have been disabled for decades.
NIH and CDC will never take this illness seriously. At last year’s “Accelerating Research on ME/CFS” meeting NIH Director Collins announced that “We have done what we can in terms of the resources, both intramurally and extramurally.” [1] That is the plainest “up yours” I have ever heard from a professional bureaucrat.
It has been almost a decade since CDC announced it’s much-ballyhooed “Multi-Site Study”. So far, NOT ONE publication besides a protocol something-or-other. And no one is even badgering them about it, except maybe a handful of people probably too sick to leave the house.
Just like some people are more equal than others, some people are more disposable than others. ME patients (along with all other chronically ill “useless eaters”) are definitely in the more disposable group. A group that is growing rapidly.
Welcome to the New Eugenics. Same great result, now with less visibility.
[1] http://occupyme.net/2019/04/17/i-want-to-believe-dr-collins-but-i-dont/
Will the CDC or anyone outside suffered take ME seriously? Well now that the almighty COVID is attached to a phenomenon that’s literally been known about for DECADES – maybe. At least until the media frenzy moves on to the next shiny object. Right now media is still milking everything it can from the sensationalist hype THEY created. Maybe that will be good for this, maybe not.
In the fall of 2010 I began having a myriad of flu like symptoms which lasted abd progressed for months…including nocturnal fevers and soaking night sweats, headaches, myalgias, severe joint pains, rashes, diarrhea, and profound fatigue. Labs were normal except for elevated CRP 15 and ekevated LOTS but neg for Hep A,B,C. Colonoscopy and stool studies were negative.
The symptoms worsened to a point of almost total inability to function. I had to take leave from work.
I then developed a cough with unilateral chest pain and frothy pink sputum.. diagnosed with PEs and Coumadin was initiated. Cardiac echo and ECGs were normal.
An infectious disease specialist diagnosed CMV.
Symptoms of fatigue were so profound i had to retire from my job.
I continued to have a multitude of symptoms for months and developed rheumatologic symptoms which have continued to this day, requiring plaquinil and steroids.
So apparently these lingering Covid symptoms are severe post viral syndrome similar to what I have suffered from. I am empathize with these patients..it certainly is life changing.
In 45 years of practice I have witnessed viral infections having symptoms lasting weeks or months and occasionally leading to CF. I have also found for mononucleosis that acyclovir 400mg tid for 10 days, begun within 24-48 hrs of the beginning of the sore throat, is a very effective treatment. There are good studies indicating that this does not work but perhaps they did not begin the medication early enough.