Posted by Heidi/Mermie . It means myalgia (muscle pain) plus inflammation of the brain and nerves (encephalomyelitis). The name ME at least conveys the severity of the illness. [It is also important to note that the terms 'CFIDS' and 'Myalgic Encephalopathy,' although commonly used, are not actually classified or even recognised by the World Health Organization in any way which makes them both extremely dangerous and unwise choices. *The term ME/ICD-CFS may not be widely known as yet but it is used to make the distinction between Chronic Fatigue Syndrome (CFS) as classified in the World Health Organisations International Classification of Diseases - as another name for the severely debilitating neurological disorder Myalgic Encephalomyelitis -and the all encompassing, broadly defined 'fatiguing' definition of CFS - two entirely different problems. You may think that a name shouldn't be that important and you're right, it shouldn't be, but words have such enormous power. I envy people with illnesses like Multiple Sclerosis and Parkinson's as so much is understood just by mentioning such names. Ironically, ME/ICD-CFS is physically is very similar to both these illnesses, it just isn't as well understood by the public. The 'fatigue' felt by people with ME/ICD-CFS bears no relation to any sort of fatigue that anyone without personal experience of this illness has ever felt at any time in their lives. It is not a signal to the body to rest, but rather it is the result of bodily processes going haywire, organs malfunctioning and a body struggling to function despite being seriously compromised and damaged. It's not just that it's more severe than normal fatigue, it's that it's a completely different problem altogether - not fatigue at all in fact. If you are tired all the time, you do not have ME/ICD-CFS. The terms 'fatigue' and 'chronic fatigue' were not associated with this illness at all until the name Chronic Fatigue Syndrome was coined in 1988 (this despite the fact the illness had already been legitimately named Myalgic Encephalomyelitis in 1956) (Hyde 2005, [online]). The 'f' word was selected in 1988 entirely for what it could achieve politically: it was never intended to be a genuine medical description of the symptomatology of the illness. M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system - not a problem of 'chronic fatigue.' Mark Lovelass MD, an infectious disease specialist and head of the AIDS and CFS Clinic at Oregon Health Sciences University, testified at a 1995 congressional briefing, that a CFS patient, "feels effectively the same every day as an AIDS patient feels two months before death." (Berne p. 25) MYTH: ME/ICD-CFS is psychosomatic or psychological in origin Few people know that many well-known illnesses were incorrectly attributed to psychological causes in their early years. Just 30 or so years ago Multiple Sclerosis, for example, used to be called 'hysterical paralysis.' Diabetes, asthma, stomach ulcers and epilepsy (just to name a few) were all thought to be psychological illnesses at one point. It's a familiar pattern. When a physical cause can not be found for an illness straight away it is often labelled as being psychologically caused - even if there is no evidence for that either. Years later, with modern testing, it is obvious that there are many physical abnormalities and deficiencies in the bodies of ME/ICD-CFS patients. But the mental illness label seems to go on far more easily than it comes off, as Dr Berne explains: "Double standards allow medical doctors to diagnose psychiatric illnesses in patients in the absence of a known physiological cause, but do not typically allow the psychiatrist or psychologist who rules out emotional causes to rule in physiologic illness. That is, acceptable practice allows a physician to say "It's all in your head" but how often does a psychiatrist or psychologist say "nothing wrong with your head; the illness is all in your body"?" ( It's not that ME/ICD-CFS researchers, doctors and sufferers don't want to be associated with mental illness, it's that we want treatments and ultimately a cure to be found, and it can't be found in trying to cure a mental illness that doesn't exist. It was always obvious to those doctors who did not rely purely on test results (in the early days when there was not the abundance of research available that there is now), however, that ME/ICD-CFS was a distinctly different problem to that of depression or anxiety. Dr David Bell M.D., an expert in the field, asks:
on 8/27/2007, 4:21 am
ME (Myalgic Encephalomyelitis) is the term patients generally prefer in Canada, the UK and Australia
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