by Jodi Bassett

In trying to explain how extreme the suffering is, and how urgent the need is for genuine advocacy in Myalgic Encephalomyelitis (M.E.), just relating the basic facts isn’t enough. I can tell you the following basic M.E. facts:
• M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis (MS), Lupus and Polio.

• M.E. occurs in epidemic and sporadic forms, over 60 M.E. outbreaks have been recorded worldwide since 1934.

• What defines M.E. is a specific type of acquired damage to the brain (the central nervous system) caused by a virus (an enterovirus). It is an acute (sudden) onset neurological disease initiated by a virus infection with multi system involvement which is characterised by post encephalitic damage to the brain stem.

• The term M.E. was coined in 1956 and means: My = muscle, algic = pain, Encephalo = brain, mye = spinal cord, itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.

• M.E.is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.

• M.E. can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication. In some cases M.E.is fatal.

• The hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input. This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor ‘activities’ can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (e.g. heart damage or organ failure), disease progression or death.

If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive. M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

• M.E. is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose, even within just a few weeks of onset, using a series of objective tests.

• M.E. is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder. M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.


• Many patients with M.E. do not have access to even basic appropriate medical care. Medical abuse and neglect is also extremely common and often results in the disease becoming severe (and in some cases, death is caused).

• Governments around the world are currently spending $0 a year on M.E. research.

Read more / les mer: Planetthrive.com