Chronic fatigue syndrome is a largely misunderstood health condition with an extremely limited number of specialists offering care. The millions of people suffering from Long COVID have forced the condition into the spotlight, calling for validation, additional research funding, and better treatment options.*

What is chronic fatigue syndrome?

Chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME/CFS), is a complex chronic condition with a variety of different symptoms. The most common symptom is post-exertional malaise (PEM), where even the smallest amount of physical or mental exertion triggers utter exhaustion. 

It’s estimated that up to 2.5 million people in the U.S. live with ME/CFS, with 90% of cases undiagnosed. ME/CFS is largely misunderstood and often comes with a deep stigma in the medical community. Despite mounting evidence, many physicians still consider ME/CFS to be psychosomatic, or caused by anxiety or even laziness. Even if a physician acknowledges the condition, most medical schools do not include it in their curriculum, leaving clinicians unprepared to help their patients.

Aside from significantly impacting everyday life, ME/CFS can lead to many secondary conditions, such as mast cell activation syndrome, fibromyalgia, and a number of autoimmune and intestinal disorders.

There is no cure for ME/CFS but, depending on the specific situation, it can be managed. 

Long COVID forces recognition of ME/CFS

ME/CFS can be caused by various infections, now including SARS-CoV-2, the virus that causes COVID-19. Many patients with Long COVID are experiencing ME/CFS, and the millions of long-haulers seeking care are placing a strain on the few ME/CFS specialists in the country. With the demand for care so high, those specialists are being forced to discharge some of their more stable existing ME/CFS patients, leaving them scrambling to find comparable care.

“[It’s] the difference between being stuck at home, miserable and in pain, and actually going out once or twice a day, seeing other humans and breathing fresh air,” says ME/CFS patient Kira Stoop. Long COVID has forced the medical community to face ME/CFS head-on. “The system is cracking and it needs to crack,” she says.

Specialists are working hard to educate patients and fellow physicians about ME/CFS, but fewer doctors are entering the field, largely because of the U.S. healthcare and insurance systems. “Hospital systems want physicians to see lots of patients and they want them to follow the rules,” says David Kaufman, M.D., a ME/CFS specialist from the Center for Complex Diseases in Mountain View, California. “There’s less motivation for moving into areas of medicine that are more unknown and challenging.”

Looking forward

Long COVID has forced ME/CFS and similar chronic conditions into the spotlight, raising awareness and encouraging sympathy from healthcare providers. Feeling heard and understood is an important first step in ME/CFS care, but there is still more work that needs to be done. 

Increased funding and multiple studies are accelerating the process. The Long COVID Research Initiative, the RECOVER study, and various clinical trials are just a few research initiatives working to understand the symptoms and causes of Long COVID so that treatments can be more targeted and effective. 

The National Institute of Health recently committed $1.15 billion to Long COVID research, roughly 80 times more than what has been spent on ME/CFS in the past. The results should benefit both COVID long-haulers and existing ME/CFS patients. New ME/CFS and Long COVID-centered clinics are also gaining traction, and hope to soon open their doors. 

*Yong, E. (2022, September 26). Long COVID Has Forced the U.S. to Take Chronic Fatigue Syndrome Seriously. The Atlantic. Retrieved October 4, 2022, from https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/