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MEitis
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Posted by: cfsgranny
May 31, 2008 |
I want to support this campaign but I still want to simply state my concern for the emphasis on MEopathy. In the recent newsletter, it states that 80% of us have inflammation of the spinal cord (paraphrasing on my part). I believe the already existing name of MEitis should reflect the majority. If a new name is created, it should be for those who do not meet the criteria for MEitis.
This makes so much more sense to me. As it is being emphasized, we would still use the acronym M.E. so that the transition from CFS to ME would be clear. Then within the scope of MEitis, there would be a place for the 20% with the creation of a subgroup.
Please don't make another mistake. We are the people who will suffer for it. You cannot compromise on the truth. The truth is what it is. A disease has been defined and used for decades called myalgic encephalomyelitis. Do not try to create a new disease name for the minority.
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I agree with Granny about the name
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Posted by: 1980cfsrefugee
August 13, 2008 |
MEopathy is as much of a throwaway name as CFS. What research has been done on MEopathy? Who are the leading MEopathy researchers and physicians? What is the case definition for MEopathy? As far as I can tell the answer is: none, no one, and nothing. You will be starting from zero, and will be giving others the opportunity to define this illness. I supported the name change when it was MEitis, because it accurately represented my symtoms and was universally accepted as a legitimate illness, unlike MEopathy. MEopathy is an even worse name than CFS. At least now CFS has some name recognition and credibility, plus 20+ years of research. MEopathy has nothing. As someone who has had CFS since the 1980s, I was hoping for a respectabe and accurate new name. MEopathy is not that name, and I cannot support it. |
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