Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID

By Tamsin Zandstra

#MEAction defines Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a chronic and complex disease that typically begins following an infection, most commonly with a virus. The disease-state is likely caused by the patient’s immune response, which is why a variety of physiological stressors appear to be able to “trigger” the disease. It is estimated that a total of 2.5 million Americans are suffering from ME/CFS, and ME/CFS has also been associated with Long COVID. 

This post has been informed by secondary research with guidance from the Director of Scientific and Medical Outreach at #MEAction, Jaime Seltzer. #MEAction is a movement fighting for research, education and recognition so that everyone with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can receive the care and support they need. 

The most common symptoms of ME/CFS are: 

• Post-exertional malaise (worsening of symptoms following even minor physical or mental exertion) 
• Persistent fatigue
• Sinus or nasal problems, swollen glands, tender lymph nodes or a sore throat
• Unrefreshing sleep or difficulty sleeping
• Abdominal issues such as stomach ache, nausea or bloating
• Difficulty concentrating
• Sensitivity to light and chills
• Muscle or joint pain
• Headaches

People with ME/CFS can find everyday tasks such as showering and getting dressed extremely difficult, sometimes being confined to their beds. In addition, symptoms may make going to work, attending educational classes and having a normal family and social life challenging.

For people battling Long COVID these symptoms may be familiar. The Long COVID Initiative spoke with the Director of Scientific and Medical Outreach at #MEAction, Jamie Seltzer, who said: 

“Several studies show that about half of people with the Long COVID label meet the diagnostic criteria for ME/CFS. And unfortunately, just because you escaped Long COVID for your first and second [COVID-19] exposure does not mean you will necessarily avoid it on your third infection.”

ME/CFS is most common in patients between the ages of 40 and 60, however can impact people of all ages much like Long COVID. Similarly, both conditions seem to impact women more than men.

Shared symptoms between ME/CFS and Long COVID include sleep problems, muscle and joint pain, digestive issues, headaches, dizziness, shortness of breath, post-exertional malaise, heart palpitations, anxiety and depression. Some unique symptoms to Long COVID include coughing and change in smell and taste. The diagnosis windows of ME/CFS and Long COVID are very similar. A diagnosis of either requires a three to six month period of persisting symptoms as well as the elimination of other possible diseases. 

Strategies used to treat ME/CFS can also be effective for treating Long COVID. One such strategy is “pacing,” a self-managed form of activity where patients are active when they have the energy, rest when they feel tired, and leave time for extra rest before and after any strenuous activity. 

Support groups for people with ME/CFS have been key for building solidarity among those with the condition and creating a space to share their experiences. Jaime Seltzer of #MEAction shared about the work the organization has done to support people with Long COVID:

“It’s a terrible thing to have seen this coming, but we were poised to help in a way even government agencies, with a history of underfunding post-viral disease, were not. Before Long COVID got its name, #MEAction was creating materials for the people we knew were going to be disabled by post-viral disease. That includes our Pacing Guides (original and for pediatrics), our Long COVID landing page, our Hospitalization Kit, and a guide to dissecting healthcare disinformation. Shortly thereafter, we began our #StopRestPace campaign to encourage people to rest after COVID and decrease their chances of developing ME/CFS.”

Despite the existing knowledge about ME/CFS and Long COVID, there is still a great deal to be learned about the causes and the best ways to diagnose and treat the conditions. ME/CFS remains the most underfunded disease in the National Institutes of Health portfolio when compared to the disease burden.