Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a chronic systemic neuroimmune condition characterised by “post-exertional malaise” (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME/CFS are devastating enough to leave 25-30% of patients housebound or bedbound. For moderate to severe patients, living with ME/CFS is like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.
Up to 91% of people with ME/CFS have not been diagnosed. These people are not receiving appropriate treatments or healthcare advice.1
How many people have ME/CFS?
It is estimated* that at least 1,000,000 Americans, 250,000 British people, 100,000 Australians, and 100,000 Canadians have ME. An estimated 75-85% of them are women and 80-90% of them are undiagnosed. Unfortunately, there are currently no estimates for South Africa. The Foundation is working towards conducting surveys throughout the country to establish the prevalence of ME/CFS.
Terminology and Definition
ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is also called just ME or CFS, or SEID (Systemic Exertion Intolerance Disease). There is a lot of controversy among patients and medical professionals as to the correct terminology and definition of the disease.
The ME CFS Foundation South Africa uses the terminology Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - ME/CFS until there is a global consensus on what term to use.
SOURCE: Open Medicine Foundation
Dr Charles Shepherd
Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, explains how M.E.
is diagnosed, in a short video that was made by ME/CVS Vereniging.
SOURCE: ME Association UK