How COVID-19 May Help Us Learn About Chronic Fatigue Syndrome

People experiencing long-term symptoms following acute COVID-19 infection are increasingly meeting the criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Interestingly, such patients do not have to have had severe COVID-19 disease; some who had milder cases and subsequently tested negative for the virus also can have a long recovery process. These patients often have symptoms such as extreme fatigue, post-exertional malaise (i.e., feeling very tired and sick after small degrees of mental or physical exertion), chronic musculoskeletal pain, sleep disorders, difficulty concentrating and remembering, fast heart rate and dizziness after assuming upright posture suggestive of postural orthostatic tachycardia syndrome (POTS), which overlap with other chronic illnesses, including, of course, ME/CFS.

In an international survey of 3,762 COVID-19 "long-haulers" published in a preprint last December, the most frequent symptoms reported at least six months after illness onset were fatigue in 78 percent of respondents, post-exertional malaise in 72 percent, and cognitive dysfunction ("brain fog") in 55 percent. At the time of the survey, 45 percent of people reported requiring reduced work schedules due to their illness, and 22 percent reported being unable to work at all. While this profile may sound like the “typical” ME/CFS patient, it should be noted that the long-haulers additionally often experience continuing shortness of breath, as well as loss of taste and smell.

But maybe the long-haulers are typical ME/CFS patients, just ones who have a little bit more for the provider to ponder about. After all, previous ME/CFS research had indicated a 10 percent rate of symptoms persisting at least a year following a variety of infections. If you believe that ME/CFS is the result of an infection, and considering the ongoing COVID-19 pandemic, the ME/CFS world could see tens of millions added to its ranks.

Research on Long COVID May Help Us Understand Chronic Fatigue Syndrome

The NIH recognizes the gravity and science’s responsibility here, and it is hoped that knowledge gained through research on “long COVID syndrome” may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases.

The natural history of the long COVID syndrome is not yet clear. COVID-19 affects almost all organ systems and researchers need to understand the biological basis of the recovery process, the causes of persistent disability and how best to improve the health of those who are not better after clearing the virus. This is important because what is learned through research about long COVID may help understand, treat, and prevent ME/CFS and potentially other diseases too.

There is much to learn. Is there something about the long COVID patient that makes him or her more at risk of becoming a long-hauler? Are certain COVID-19 virus mutations more problematic when it comes to increasing the risk of long COVID? And will scientists discover things that might help ME/CFS patients who were ME/CFS patients before any of us heard about coronavirus?

Unfortunately, considering the pandemic’s continuing carnage in different parts of the world, I think there will be no shortage of patients to learn from.