Bob
Senior Member
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- England (south coast)
As many of you know, the ME community has strong beliefs on acknowledging and maintaining the distinction between ME and CFS. I personally share them.
By exclusively employing the use of the term ME to the exclusion of CFS in the IMEA title, this group initially gave me the impression that they were advancing the interests of ME (Ramsay, Hyde/Nightingale ME). But upon a closer examination, I cannot be certain that they are doing so at all, and they have not made any attempted to make the distinction clear anywhere (which I would have expected from a new ME org, possibly disatisifed with those that have failed to do so). Further, I get the distinct impression that whilst they are using the term ME, they are in fact referring to CFS.
Is this new org ignorant of the medical distinctions and history surrounding both ME and CFS and or the finer details outlined in historical ME medical literature? Or is it a case of this new org unilaterally and mistakenly employing the use of the term ME when it should be using the term CFS?
Don't they know and understand that even the CDC today recognises the distinction, and clearly states that ME is not CFS on their web site? ...
Yes, if a patient advocacy organisation is going to start campaigning for changes to the use of the terms 'ME' and 'CFS', then they need to be exceptionally and absolutely clear about how exactly they define the terms themselves, in order to avoid all possible ambiguity.
There seem to be many different definitions of both ME and CFS, depending on what literature and evidence you refer to, which definitions and diagnostic criteria you are using, what history books you read, what country you live in, what doctor you are seeing, and what your personal beliefs and preferences are.
I'm not clued up on the ICD definitions of CFS and ME, but I expect that they are more specific than the definitions that individual countries use.
Some people believe that ME can only be found in outbreak areas, and has specific neurological signs or symptoms.
Others, like me, believe that ME can be defined by the Canadian Criteria, and possibly that post-exertional malaise is a good enough criteria for an ME diagnosis.
And then what of the individuals who don't meet the particular 'ME' diagnostic criteria of choice?
What label will these patients be given?
If these patients are going to be given a 'CFS' diagnosis, then we can't campaign that the CFS name is changed to ME.
If ME is going to be the only name used for CFS/ME, then ME would have to become a broad, inclusive, diagnosis, and the name change will be surface deep, and will make little difference, unless we also have a CFS diagnosis alongside it, or simply a 'chronic fatigue' diagnosis.
If we are going to separate ME from CFS, then there will be a lot of potential 'CFS' patients who are going to be extremely unhappy.
And if it is proposed that 'CFS' is downgraded to simply 'chronic fatigue' then this will make a lot of CFS patients even more unbearably unhappy.
Personally, I believe that some CFS/ME patients, with mild to moderate symptoms, who might not potentially meet a more exclusive 'ME' diagnosis, are actually XMRV positive.
It's such a complex area that I believe this subject needs to have our whole community on board if changes are proposed.
There's a thread about this subject here, if anyone is interested in joining the debate...
Diagnostic Criteria - can we resolve our community's differences?
http://forums.aboutmecfs.org/showth...ia-can-we-resolve-our-community-s-differences