Tuesday, January 10, 2012

Reasons ME advocates cannot unilaterally discard the term CFS

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For anyone who cannot see my comment on Ange's Blog (to which I urge as
many as can manage to contribute):

[I hope that Ange and readers, here, will appreciate that my post is not
with any negative hostility to her conclusions but as a reaction to the
points that she quite properly raises for consideration. I am grateful
to her for providing the propositions and an intelligent forum in which
to discuss them.]

I am pleased to see that, after her, "7 Reasons ME advocates cannot
unilaterally discard the term 'CFS' (or 'ME/CFS') just yet!"
(porbeagle.blogspot.com, 10 January 2012 -
http://porbeagle.blogspot.com/2012/01/7-reasons-me-advocates-cannot.html),
Angela Kennedy says that she is not arguing in favour of keeping CFS or
CFS/ME as synonymous with M.E.

There are two things, in particular, that concern me about the time
before separation that she (and others) would approve: (1) There
probably never will be a time when the individuals/institutions she
names, elect or are persuaded not to prefer CFS or use CFS/ME after 25
years of clinging to it, especially if they have a career interest or
profit motive in doing so. (2) Enduring CFS or CFS/ME when it is
scientifically, logically and morally untenable because opposing it may
"lead us into bigger problems" and only using, "the term ME on its own
whenever possible," is tantamount to tolerating institutionalised bullying.

My view is that, it should never have been necessary, is long overdue
and until we separate M.E. from CFS, we shall make no progress no only
for M.E. sufferers but anyone else caught up in this indiscriminate bundle.

Best wishes
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org

* * *
Dr. Dowsett has noted that when ME was changed to CFS in 1988, all connection to the prior research into the disease was lost.  And the same will happen when the name is changed again.  Yes, there's a boatload of garbage out there about stress and depression, but there are also good studies about post-exertional relapse, etc., which are filed under CFS and shouldn't be lost.
 
 

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