What is ME/CFS?

ME/CFS is a debilitating and underestimated illness. The picture shows an ME/CFS with sunglasses against light-sensitivity, resting on a couch.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic illness that affects many body systems. Patients can suffer from extreme exhaustion, unrefreshing sleep, problems with thinking and concentration, pain, orthostatic intolerance and many other symptoms. A hallmark feature of ME/CFS is a marked symptom exacerbation following exertion, which is referred to as post-exertional malaise (PEM).

ME/CFS has an estimated prevalence of 400 per 100.000 persons meaning that approximately 2 million citizens in Europe suffer from the illness. ME/CFS affects children and adults of all ethnicities and socioeconomic backgrounds. The average age of onset is in the mid-thirties, although ME/CFS has been reported in patients younger than age 10 and older than age 70.  Approximately 75 per cent of ME/CFS patients are women.

The cause and pathology of ME/CFS are unknown although there is an increased incidence following certain types of infection, most notably Epstein-Barr virus infection. There is currently no diagnostic test, no FDA- or EMA-approved treatment and no cure for ME/CFS.

An estimated 25 per cent of ME/CFS patients are home- or bed-bound at some point in their lives. Many are unemployed or have reduced productivity. Symptoms typically persist for years. Recovery is the exception, although patients who get ill at adolescent age seem to have a better prognosis.

In scientific studies, ME/CFS patients have been found to be as functionally impaired as patients with other chronic conditions including multiple sclerosis, congestive heart failure and chronic renal disease. In the United States, the direct and indirect economic costs of ME to society have been estimated at $17 to $24 billion annually.

Further reading

Fact sheets