What is M.E.?........

M.E. is a neurological disease and stands for Myalgic Encephalomyelitis. 
My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation

It is an injury to the Central Nervous System. usually triggered by an infectious disease process, e.g. a virus, or by chemicals over stimulating the immune system. It is a multi-system disease, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems.

Prognosis is variable depending on how much and which part of the brain has been damaged.  Complete pre-illness recovery is rare but possible (around 6% of cases.)   Some improvement, even marked improvement (different from full remission) is more likely than complete recovery, although relapses can occur several years after remission.  Most cases stabilise at varying degrees of disability.  Around 30% of cases are progressive and degenerative  and degeneration of end organs may result in death. (One quote of early death rate in M.E. is 10%.This figure includes suicides.  Early death from cardiac pathology is put at 2%.  Pancreatic failure can also contribute to early death.

Symptoms can be multiple and vary from person to person but common symptoms include post-exertional malaise, cognitive problems (such as short-term memory loss and concentration difficulties), muscle and nerve pain, muscle weakness, noise and light sensitivity, sleep and temperature disturbance, orthostatic intolerance (inability to sustain upright activity e.g. standing, sitting or walking) and sensitivity to food, alcohol, chemicals and medicines.

M.E. may or may not be the same as CFS (Chronic Fatigue Syndrome). This is because there are currently 10 different interpretative criteria for CFS, some with a psychiatric and others with an immunological specification. If the CFS criteria used involves damage to the Central Nervous System, then it could well be the same disease as M.E. Other CFS criteria used, especially the Oxford criteria, focus on patients whose fatigue could be of psychiatric origin and this is not M.E.

The name M.E. has a long medical history of being a neurological disease (see our document ‘Saying No Can Be Positive’ for further medical history to the name), being classified in neurological textbooks since the 1960s.

The name CFS was created in the 1980s with almost exclusive emphasis on the word ‘fatigue’, leaving out much pathology (structural evidence of disease) and previous physical M.E. research findings. The vagueness of the term CFS is thus attractive to insurance companies, drug companies promoting anti-depressants for fatigue and government departments intent on saving money through benefits, support and research programmes. Any illness which has guidelines excluding pathology tends to not be taken seriously by medical authorities and the like.

Therefore, the term CFS can be harmful as a label to M.E. sufferers because it can exclude pathology. Sometimes, however, researchers and medical staff use the term CFS to mean M.E. So the situation is unacceptably confusing. M.E. is a more specific name implying the pathology which has been found