I just read and article on Research1st.com about CFS/ME e-published ahead of print in the Journal of Internal Medicine called “Myalgic Encephalomyelitis: International Consensus Criteria.” The article is written by a group researchers from 13 countries to define CFS/ME. It is all in a name! I think that they hit the nail on the head when they said that Myalgic Encephalomyelitis gives more credibility to the disorder! For years it CFS has been another dumping ground for patients that less scrupulous doctors have dropped their patients into rather then looking more closely at what is going on. I can't really point fingers though cause we didn't know much about Fibromyalgia or Chronic Fatigue Syndrome except there seemed to be a lot of people being diagnosed with it that seemed to want a lot of drugs and were very needy in health care in many ways. I am just as guilty as others in grouping these people into the 'crock' or 'drug seeking' group and I have more than a little remorse now that I too am diagnosed with the disorders.
I am glad that there is a panel of world renown researchers and physician's that have gotten together to investigate the disorder and provide consistent criteria for diagnosing the disorder. It will help isolate the actual patient with the disorder from some those with other disorder. The abstract states, "The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology."
Read the article. Its worth it!
1 comment:
Great post, Vickie. Here in the UK, the discrimination against people with M.E. can be horrendous. Someone with M.S. is treated with dignity and respect, is listened to, and their disease recognised (even though a generation ago, M.S. was known as "the faker's disease"). Someone with M.E. is likely to be treated with contempt and downright rudeness, not listened to (hard to get a hearing even for non-M.E. related medical problems) and because "nothing shows" on tests (are they looking in the right place for the right things??) they aren't honest enough to say "I don't know" but instead say it's all in our heads and blame us for our illness. I have been very fortunate not to have received too much of this treatment, and my disability has been recognised and I've had good support from the medical profession locally.
The problem of too-wide diagnostic criteria has wreaked havoc, because any trials taking place involve samples consisting of people with many conditions (e.g. depression) and the "treatments" advocated may help these people improve, but for someone with genuine M.E., Cognitive Behavioural Therapy and especially Graded Exercise Therapy can make us worse, not better, but because the M.E. people in the samples are in the minority, the verdict is that the treatment "works" and there's nothing else on offer. In the UK, no govt. money has been spent on biomedical research (all funded by charity) and millions have been wasted on maintaining the out-dated psycho-social model.
There's a real double-standard, too. At the same time that they are pushing the psycho-social model, they do not permit people with M.E. to donate blood. Is this seriously the only "psychiatric" disorder transmitted through blood?
I hate the "Chronic Fatigue Syndrome" label which is at best wildly inexact, and at worst, insulting. Fatigue is only one of our problems, and not always the worst.
The whole thing's nothing short of scandalous.
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