About M.E.

ME (myalgic encephalomyelitis, or encephalopathy) is a neurological disease that affects around 250, 000 people in the U.K., a further 1 million in the US, and an estimated 7 million worldwide. It’s characterised by profound  fatigue, cognitive dysfunction, sleep problems, autonomic dysregulation and hormonal and immunological disturbances. For patients, this translates as pain, muscle weakness, problems with language and memory, sensitivity to light, sound and movement, ‘flu-like symptoms, nausea, headaches, dizziness, bouts of insomnia, and an ongoing exhaustion that isn’t alleviated by rest or sleep. A key marker of the illness is “post-exertional malaise” (PEM) – even the slightest activity, physical or mental, makes symptoms worse. Some people are mildly affected, and may be able to work part-time; at the severe end of the spectrum, around one-quarter of sufferers are housebound or bedbound, often for years, and unable to carry out the basic tasks of day-to-day living.

ME is a slippery beast. No one fully understands the illness, and there’s no cure. It has a number of aliases, including chronic fatigue syndrome (CFS), post-viral fatigue syndrome (PVFS) and systemic exertion intolerance disease (SEID). The term ME was first coined after an outbreak of the illness at the Royal Free Hospital in London in the 1950s. Research at the time blamed a virus. But in the 1970s psychiatrists looked again at the data for this and other outbreaks of ME, and concluded they were episodes of mass hysteria. The illness became a battleground between two opposing camps: those who believe ME is a physiological disease, and those who think it’s psychological in origin. The NHS maintains an ambivalence towards ME, listing the following as possible causes: viral or bacterial infection; immune dysfunction; hormonal imbalance; and psychiatric problems. But there’s a fast growing body of evidence showing a range of physiological abnormalities in patients with ME. The World Health Organisation (WHO) classifies ME as a neurological disorder, and since 2015 the US has recognized ME as a physical disease. Early in 2017, researchers at Griffith University, Melbourne, Australia, discovered a possible explanation for the symptoms of ME in faulty cell receptors – read more here.

For more information and resources, see the UK charities Action for ME and the ME Association. MEAction is a grassroots international network of patients fighting for health equality for ME.

For more about me and M.E., click here.