Myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS, is a severe neurological disease. ME/CFS is most commonly triggered by an infection, often a virus.

As COVID-19 began to spread across the world, our community sounded the alarm that the virus would cause millions more to develop ME/CFS and other infection-associated diseases. Several studies estimate that half of the Long COVID community meet the diagnostic criteria for ME/CFS. The pandemic has quadrupled the number of people with ME/CFS to an estimated 9 million in the U.S., and counting.

Post-exertional malaise (PEM), cognitive dysfunction, fatigue and orthostatic intolerance are the core symptoms of ME/CFS and Long COVID. PEM is a unique symptom in which even small acts of physical or cognitive effort can worsen symptoms, such as taking a walk, showering or even speaking. ME/CFS is highly disabling with 75 percent unable to work, and 25 percent bedbound.

Read more about diagnosing and treating ME/CFS.

Post exertional malaise is “a physiological state in which all existing symptoms burn more fiercely and new ones ignite.”
– Journalist Ed Yong, The Atlantic

Two protestors pose for the camera: A black woman standing with a cane, and a white man sitting in a wheelchair.
A young white man with severe M.E. lies on a pillow with eye shades covering his eyes, and earmuffs blocking out noise.