SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.
Guardian Letters.
Cc: Denis Campbell, Health Correspondent.
I have made a new year's resolution for 2012, both as an individual
sufferer of M.E. (Myalgic Encephalomyelitis) since 1988 and as a
Research Psychologist, who founded the M.E. Community Trust.org, which
represents people affected by this dreadfully disabling neurological
illness. It is to contact everyone (whether individual, doctor,
researcher, journalist), who publishes that M.E. is "also known as," or
is to be taken as identical, synonymous, or interchangeable with Chronic
Fatigue Syndrome, CFS (David Cameron's pledge to protect NHS clouded by
emerging reality of cuts, Guardian, 27 December 2011 -
http://www.guardian.co.uk/society/2011/dec/27/david-cameron-nhs-cuts?newsfeed=true)
and to invite them either to justify this assertion, or withdraw it.
This is not a fussy or pedantic request but of crucial importance, since
I believe it is impeding progress in the understanding of and recovery
for, not only people with M.E. but patients with other conditions caught
up in this indiscriminate CFS bundle. Quite simply, researchers using
several different criteria of CFS - which even their advocates admit are
"heterogeneous", "ubiquitous" and "nebulous" - are not comparing like
with like and conclusions drawn from studies of people with various CFS
conditions - for example, that Cognitive Behaviour Therapy (CBT) is
helpful or that Graded Exercise Therapy (GET) is beneficial - may not be
merely ineffective but actually harmful for M.E. sufferers.
If they believe that CFS and M.E. are the same and that CFS is the
preferred term, they should have no difficulty in dissociating CFS from
M.E. If they are determined to retain M.E. either as an independent name
or conjoined as CFS/ME, they should explain why and define what they
mean by the terms, as they use them. I hope that, of all the options
they have, they will not rudely ignore this request, as though it had
not been made or seen by them, yet continue to conduct invalid and
unreliable research, or offer treatments that have been keeping people
ill for decades.
You are amongst the first handful, Denis, to receive such an invitation,
even before the new year begins. M.E. sufferers will be interested to
see who will follow, whether the invitations are even addressed and, if
they are, what will be the responses. We shall keep a count and let you
all know in 2013.
Yours sincerely
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org
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