Posted by Heidi/Mermie Why do so many people with ME/ICD-CFS suffer abuse and neglect at the hands of their doctors, nurses and carers? Why are parents being blamed for their children's illness? Why are the many studies proving the physical basis of ME/ICD-CFS not enough? Why is so little being done to change all these things? Well, as I said, it's complicated. This is not an exercise in blame but instead about asking people to examine their assumptions about ME/ICD-CFS and to look more closely at how exactly they came to have them and what they are based on. Very few people (I would say none) who hold negative or dismissive views on the illness actually spent any time properly studying and/or listening to its victims, or reading any real research about the illness before their minds were made up. Those who have listened know ME/ICD-CFS for the tragedy that it is. As Socrates would argue, it's not the number of people that hold an opinion that is important, but rather how that opinion has been reached that should determine the weight it is given when making up our own minds. (Botton, p. 13) Setting the record straight - the many myths of ME/ICD-CFS MYTH: ME/ICD-CFS is just a trendy new illness for people who can't handle modern life Actually it is not new at all. Myalgic Encephalomyelitis has been described in the literature (in epidemic and sporadic form) since 1934. ME has had a classification with the World Health Organization (whose job it is to categorise all illnesses) since 1969. The ICD-10 classifies ME as a neurological illness under ICD code G93.3. It clearly lists ME as an organic illness and not a psychiatric or psychosomatic one. CFS is also included under this same neurological listing. (McLaughlin 2004) As microbiologist and M.E. expert Dr Elizabeth Dowsett explains: 'There is ample evidence that M.E. is primarily a neurological illness, although non-neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised' There is no link however between having ME/ICD-CFS and being a 'perfectionist' or having a 'type A' or over-achiever personality. ME/ICD-CFS is also not caused by a period of long-term or intense stress, trauma or abuse in childhood, becoming run-down, working too hard or not eating 'right.' (Carruthers et al 2003). ME/ICD-CFS is not a form of 'burnout.' These old myths have to die. The reality, as Dr Byron Hyde M.D. explains, is that: [The] prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following , (a) an upper respiratory illness, (b) a gastrointestinal upset , (c) vertigo and (d) a moderate to severe meningitic type headache. These are only the most common onset illnesses or symptoms of which there are several. The onset illness is associated with either a low grade or subnormal temperature, headaches, sometimes persisting and accentuated by movement with intermittent attacks of vertigo or dizziness. Evidence of a previous immune insult [such as a recent immunisation] is found regularly in both epidemic and sporadic cases. The usual incubation period of the triggering illness is 4-6 days. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the presumed infectious triggering illness. MYTH: Having CFS means you are very tired all the time - the name says it all By a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about cost to insurance companies and the Social Security Administration than about public health . Their deliberate intention - based on the correspondence they exchanged over a period of months - was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the greatest tragedies in the history of medicine. Intentional or not, the damage the name has done the credibility of sufferers, and the research setbacks it's caused, are enormous. For example, medical groups that have no knowledge of the illness use people with ME/ICD-CFS as well as those with mere fatigue - indiscriminately - in drug trials and studies into ME/ICD-CFS. Then they wonder why their results are inconsistent! It would be funny if the consequences weren't so serious. The stupid name given to this illness has much to answer for. As Peggy Munson says in her recent book on ME/ICD-CFS, "Semantics should not hold up the treatment of a group of people who are clearly suffering, but unfortunately, - with [ME/ICD-CFS] - they have." CFS is probably the most common name for the illness in most countries, but due to the misunderstandings it causes, other names have emerged. Some American groups use the name CFIDS (chronic fatigue immune dysfunction syndrome), to help differentiate CFS from mere fatigue
on 8/27/2007, 4:20 am
Why are so many friends and families of sufferers not only not supportive, but downright dismissive of them or even abusive?
Sadly, thanks to the ridiculous name, (among other things) most people don't know there is an enormous difference between having mere fatigue and having actual ME/ICD-CFS - as they assume that they are exactly the same thing. Hillary Johnson, author of Osler's web, (a book that exposed the real story behind the mid-eighties ME/ICD-CFS outbreak), commented that the name was selected:
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