Letter, Re: David Cameron's pledge to protect NHS clouded by emerging reality of cuts (Guardian, 27 December 2011)
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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
PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING 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
