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.
- The National Academy of Medicine 2015 report on ME/CFS
- The International Association for CFS/ME 2014 primer for clinical practitioners
- Centers for Disease Control and Prevention website
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: When Suffering Is Multiplied by Anthony L. Komaroff
- European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe. Nacul et al., Medicina, 2021.
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Bateman et al., Mayo Clinic Proceedings – Consensus Recommendations, 2021