Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection.
At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients often suffer for life.
While “ME/CFS” is the preferred name by many, this disease has also formerly been known as systemic exertion intolerance disorder (SEID), chronic fatigue immunity deficiency syndrome (CFIDS), or post-viral fatigue syndrome (PVFS).
Everyone is at risk. ME/CFS may begin as early as age 10 and as late as age 77. Between 836,000 and 2.5 million Americans suffer from ME/CFS and estimates vary from 17 – 24 million people with ME/CFS worldwide. Although research has shown that ME/CFS is about two to four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.
ME/CFS symptoms, which can often be made worse by standing upright, include:
If you think you may have ME/CFS, take our quick online quiz.
Because these symptoms are shared with many other illnesses — and because many of these conditions lack a diagnostic test or biomarker — identifying which illnesses are present can be difficult. Some patients receive diagnoses for multiple conditions. Common conditions that occur along with ME/CFS (co-morbidities) include the following:
There is currently no FDA-approved treatment or drug for ME/CFS. As neither a cause nor cure for ME/CFS has been identified, treatment is directed at relieving symptoms. However, there are interventions and symptom-reduction strategies that you can use to significantly improve patients’ quality of life.
Learn more in our “Patient Resources” section.
Studies show that less than 9-16 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker that’s conclusive. Getting a definitive diagnosis often takes months or even years.
Providing compassionate and effective care for patients with ME/CFS can be challenging, like many other multisystemic chronic conditions. Patients and their providers must be partners with open lines of communication in order to effectively manage this illness. For medical providers seeking to provide better care for ME/CFS patients, reference our educational materials at our Medical Provider Resources page.
The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are housebound or bedbound as a result of their illness. For many, there is often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends, and the public to understand the challenges of the disease.
We know it’s so important to share personal experiences to increase understanding of ME/CFS. Visit our Humans of M.E. story archive to read and share your stories of ME/CFS, , and check out this new film project from Dialogues for a neglected illness: The Tangled Story of ME/CFS, featuring some of the most prominent voices in ME/CFS research.
“It feels like I always have the flu, only much worse. It feels like the world is always moving, and I can’t find my bearings.”
“When my symptoms first occurred, I was diagnosed with the flu during June, July, and August during off-flu season. Doctors suspected that I was a hypochondriac.”
“Sometimes it feels as if my body is shutting down on me. I think about going to the emergency room, not even able to make it to the car if I decide to go. I rarely decide to anyway, because every time I ever have gone for my invisible illnesses, they have never once been able to help me in any way.”