Post-COVID-19 Fatigue: The New Chronic Fatigue Syndrome?

“When you have your health, you have everything. When you do not have your health, nothing else matters at all.” Augusten Burroughs, American writer

“I used to go to the gym three times a week. [Now,] my physical activity is bed to couch, maybe couch to kitchen.” Athena Akrami, PhD, neuroscientist, University College London (post-COVID-19 fatigue patient)

Six plus months into the COVID-19 pandemic—caused by a coronavirus the likes of which no one has ever seen—the clinical features of the disease are still being characterized. While the case numbers and mortality are relatively easy to measure, the morbidity (the condition of being ill, diseased, or unhealthy, including the severity and duration of symptoms) is much more difficult to assess. This Germ Gem post focuses on one of the more long-lasting and vexing symptoms of the disease, that is, fatigue, as well as another problem, quarantine fatigue, which is impacting all of us.

Coronavirus Long-Haulers According to the Johns Hopkins University website, about 1% of infected people worldwide die from the disease. Those with a mild case of COVID-19 appear to recover within one to two weeks, whereas, for those with severe disease, recovery may take six or more weeks. For some, however, there is emerging evidence that there is lasting damage to the heart, kidneys, lungs, and brain.

Moreover, in the past month, numerous reports have suggested that a sizeable percentage of patients, referred to as the ‘coronavirus long-haulers,’ continue to suffer from debilitating symptoms for months. In an article in STAT on July 21, “Chronic fatigue syndrome may hold keys to understanding post-COVID-19 syndrome,” David Tuller and Steven Lubet refer to comments by Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases (NIAID) director that the symptoms of many unrecovered patients (profound exhaustion, trouble thinking or remembering, muscle pain, headaches, and more) are “highly suggestive” of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). According to Dr. Fauci, given the potentially devastating long-term health effects, “This is something we really need to seriously look at.” I agree.

What is ME/CFS? This disabling medical condition has been around for centuries. It was first referred to as myalgic encephalomyelitis (ME) in the UK in the 1950s and as chronic fatigue syndrome (CFS) in the US in 1988. In the 1990s it was recognized that these were one and the same illness and researchers agreed upon its current designation: ME/CFS.

According to the U.S. Center for Disease Control and Prevention (CDC), 2.5 million Americans suffer from ME/CFS. For more than a decade at our University of Minnesota Chronic Fatigue Syndrome Research Program, my colleagues and I tried to unravel the pathogenesis of this disease. A number of other research groups, both in the U.S and abroad, also pursued this same goal. Yet, its cause remains unknown; it is idiopathic. Nonetheless, all researchers are in agreement, this is a “real” illness that can be very disabling.

Fatigue can be a major symptom of many other medical conditions, including chronic heart, lung, and kidney disease, as well as autoimmune disorders, such as multiple sclerosis and lupus. Therefore, it is particularly important to rule out these and other medical causes of fatigue before the diagnosis of ME/CFS is made.

The main symptom of ME/CFS is a sensation of profound exhaustion made markedly worse by even the most trivial physical exertion. Unrefreshing sleep is also a salient clinical feature. And to fulfill the case definition for ME/CFS, a patient must be ill with the syndrome for a minimum of six months. Many patients were avid exercisers (some elite athletes) before they became ill with ME/CFS, but as a result of this disease, in addition to curtailing exercise, many are no longer able to work.

Historically, ME/CFS has been linked to outbreaks of a number of other infectious diseases, most notably infectious mononucleosis, chronic brucellosis, and Q fever. This is one of the reasons that I believe that research on ME/CFS could shed light on the post-COVID-19 syndrome and vice versa.

Where do we go from here? As soon as clinical researchers have the luxury to step back from the urgent needs of caring for acutely ill patients with COVID-19 and a vaccine becomes available, more attention can be paid to the long-term consequences of COVID-19. While I suspect a dialogue between infectious diseases investigators and their colleagues about post-COVID-19 fatigue is already occurring, my personal bias is that a trialogue—involving infectious diseases specialists, immunologists, and neuroscientists—is likely to be most fruitful. I hope the NIAID will step up to the plate and fund such research collaborations.

What about those of us who are just plain tired? Feeling fatigued is very common. According to a survey conducted in 2017 by the National Safety Council, 43% of Americans said they were too tired to function at work. But for most, this is not the kind of disabling fatigue experienced by patients with ME/CFS or post-COVID-19 fatigue. Doctors and other health care professionals, however, have described a new kind of fatigue emerging in the COVID-19 era: ‘quarantine fatigue.’

People are social animals. COVID-19 has kept us cooped up for longer and longer periods of time and we are growing weary of it. We are tempted “to take our chances”—and many are growing less and less risk averse the longer the virus rages on. In my case, I’m longing to see my children and grandchildren who live in Seattle and Washington, D.C. So far, the discipline needed to socially distance has held up. Fortunately, I have a wise travel companion, my wife, who has kept our visits virtual. But I am keeping my eye on the CDC’s website (www.cdc.gov) “Considerations for Travelers—Coronavirus in the US” for advice about when and how I can plan real visits once again. I hope that day is soon.