Myalgic encephalomyelitis

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Revision as of 00:59, November 30, 2019 by JenB (talk | contribs) (Added Swedish study)

Myalgic encephalomyelitis (ME) is a chronic, inflammatory, physically and neurologically disabling immune mediated disease that presents with symptoms involving multiple bodily systems. It is frequently triggered by a viral infection or a flu-like illness.[1] ME presents with symptoms in the central nervous system (CNS), autonomic nervous system (ANS), immune system, cardiovascular system, endocrine system, digestive system, and musculoskeletal system.[2][3] It is classified by the World Health Organization (WHO) as a neurological disease in 1969.[4]

ME has occurred in both epidemic and sporadic forms.

A hallmark symptom of ME is post-exertional malaise (PEM), which is an intolerance to previously achievable cognitive or physical exertion.[5][6][7][8][9][10] Other key symptoms include muscle weakness and easy fatiguability, sleep disturbance, and cognitive dysfunction. ANS dysfunction is frequent, although specific symptoms vary from patient to patient and may include postural orthostatic tachycardia (POTS), reduced heart rate variability at night, and both cold and heat intolerance. Other common symptoms include myalgia (muscle pain), neuralgia (neuropathic pain), neck and spine stiffness, and sensory symptoms including sensitivity to light, sound, touch, paraesthesia (skin tingling or numbness) and hyperaesthesia (skin sensitivity and pain, and allodynia). There is a progressive form of ME, but it is rarer than the relapsing-remitting type.[11]

Among adults, ME is more common in women than men.[12] New onset has been observed in children[13] and in adults usually between the ages of 40-60.[14] Bakken et. al notes two age peaks for CFS/ME; age group 10 to 19 years and a second peak in the age group 30 to 39 years.[15]

There are no approved pharmacological treatments for ME anywhere in the world except in Argentina, which has approved the immunomodulator Ampligen for severe ME/CFS as of August 23, 2016.[16]

Linda Crowhurst is married to Greg Crowhurst; they reside in Belfast, Northern Ireland. Greg is Linda's full-time carer as she is very severely ill with ME. As of June 2018, Linda has been ill for 25 years. This image is a still from the video Wasteland which visually documents Linda's very severe ME. Greg posted a YouTube video in 2006 (reposted in 2007) of Linda speaking of her condition and showing her neurological symptoms which are the first known public visual document of very severe ME. She is now bedbound barely able to move and unable to feed herself
Jennie Spotila is an American ME patient who fell ill on October 6, 1994. Jennie is disabled, mostly housebound, and uses a wheelchair but has been an ME/CFS advocate for many years. She writes the blog Occupy M.E. She served on the Board of Directors of The CFIDS Association of America and testified before the CFSAC


History[edit | edit source]

Hillary Johnson is an American journalist and while ill herself, wrote the book Osler's Web which is the historical account of the early years of a "new" illness that had an outbreak at Incline Village which she shared the same symptoms. The illness came to be known as chronic fatigue syndrome (CFS). Johnson spent nine years investigating the outbreak and the CDC's refusal to acknowledge a devastating disease (deeming sufferers of Incline Village as having "mass hysteria") that can be spread through casual contact. She appears in the documentary Forgotten Plague and currently writes at Oslersweb.com