See below message asking for people in areas of UK without a NHS clinic to participate in research comparing outcomes for people with and without access to a clinic.
Jenny
-----Original Message-----
From: drjohngreensmith@mefreeforall.org [mailto:drjohngreensmith@mefreeforall.org]
Sent: 21 February 2010 20:44
To: drjohngreensmith@mefreeforall.org
Subject: Cuts doom plans for ME clinics (Manchester Evening News, 18 February 2010)
Manchester Evening News Letters.Cc: All local M.E. support groups.
The news that two centres, planned for the treatment of people with M.E. (Myalgic Encephalomyelitis) in Tameside and Glossop, are not now to be opened, due to financial constraints, may not be as grim as it first appears to local M.E. sufferers (Cuts doom plans for ME clinics, Manchester Evening News, 18 February 2010). In fact, it presents an unexpected research opportunity, which should be seized upon.
It is almost certain that the proposed clinics were to have offered Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET), as recommended by the NICE (National Institute for Health and clinical Excellence) guidelines of 2007. Since the very latest research review (Twisk and Maes, September 2009) confirms the findings of every previous study - including those of the same people advocating and practising these treatments - that CBT/GET is not only ineffective but potentially harmful for many patients with M.E., they may think that they had a lucky escape.
Now, there is a real chance to compare how M.E. sufferers fare in an area which does not have these clinics with a matched sample of subjects (age, sex, length of time with M.E. etc.) in areas that do have them. So, instead of a vague, subjective feel-good rating that it "helped" them, there would be some observable measurable recovery: of being able to return to work or school and resume a normal social life, without having relapsed within a 6 month or 1 year follow-up.
I would like to hear from anyone, whether or not they are a member of a local support group, not only in this area, but anywhere in the country deprived of a clinic, but having aspirations of having one, who would like to join us in a research programme to test the hypothesis that M.E. sufferers, perhaps surprisingly, are better off where there is no clinic (providing that they have good support from a sympathetic GP and treatment for symptom relief, such as pain, for example, though perhaps not, if their GP disbelieves M.E. or treats them as malingerers or psychiatric cases).
Whatever the results, we would have a better basis than we do now for determining the priority of the kind of research to be pursued and, if there are to be any specialist clinics at all, which kinds of treatment ought to be offered and by which kinds of specialist, within them. I would also like to hear, therefore, from advocates of clinics in those parts of the country, which do have clinics up and running, for the purpose of comparison. The findings should, likewise, aid them in determining whether this service should proceed and whether the current treatments should continue at all.
I am, accordingly, sending a copy of this letter to all local support groups in the UK, with permission to forward and republish on the Internet and in newsletters for maximum publicity to join this research initiative not to be missed.
This apparently disappointing news may have been a blessing in disguise for M.E. sufferers all over the country.
Yours sincerely
drjohngreensmith@mefreeforall.org (drjohngreensmith@mefreeforall.org)
Dr John H Greensmith
ME Free For All. org
-------------------- m2f --------------------
North London ME Network
Read this topic online by going here and logging in to the members area.
-------------------- m2f --------------------
Jenny
-----Original Message-----
From: drjohngreensmith@mefreeforall.org [mailto:drjohngreensmith@mefreeforall.org]
Sent: 21 February 2010 20:44
To: drjohngreensmith@mefreeforall.org
Subject: Cuts doom plans for ME clinics (Manchester Evening News, 18 February 2010)
Manchester Evening News Letters.Cc: All local M.E. support groups.
The news that two centres, planned for the treatment of people with M.E. (Myalgic Encephalomyelitis) in Tameside and Glossop, are not now to be opened, due to financial constraints, may not be as grim as it first appears to local M.E. sufferers (Cuts doom plans for ME clinics, Manchester Evening News, 18 February 2010). In fact, it presents an unexpected research opportunity, which should be seized upon.
It is almost certain that the proposed clinics were to have offered Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET), as recommended by the NICE (National Institute for Health and clinical Excellence) guidelines of 2007. Since the very latest research review (Twisk and Maes, September 2009) confirms the findings of every previous study - including those of the same people advocating and practising these treatments - that CBT/GET is not only ineffective but potentially harmful for many patients with M.E., they may think that they had a lucky escape.
Now, there is a real chance to compare how M.E. sufferers fare in an area which does not have these clinics with a matched sample of subjects (age, sex, length of time with M.E. etc.) in areas that do have them. So, instead of a vague, subjective feel-good rating that it "helped" them, there would be some observable measurable recovery: of being able to return to work or school and resume a normal social life, without having relapsed within a 6 month or 1 year follow-up.
I would like to hear from anyone, whether or not they are a member of a local support group, not only in this area, but anywhere in the country deprived of a clinic, but having aspirations of having one, who would like to join us in a research programme to test the hypothesis that M.E. sufferers, perhaps surprisingly, are better off where there is no clinic (providing that they have good support from a sympathetic GP and treatment for symptom relief, such as pain, for example, though perhaps not, if their GP disbelieves M.E. or treats them as malingerers or psychiatric cases).
Whatever the results, we would have a better basis than we do now for determining the priority of the kind of research to be pursued and, if there are to be any specialist clinics at all, which kinds of treatment ought to be offered and by which kinds of specialist, within them. I would also like to hear, therefore, from advocates of clinics in those parts of the country, which do have clinics up and running, for the purpose of comparison. The findings should, likewise, aid them in determining whether this service should proceed and whether the current treatments should continue at all.
I am, accordingly, sending a copy of this letter to all local support groups in the UK, with permission to forward and republish on the Internet and in newsletters for maximum publicity to join this research initiative not to be missed.
This apparently disappointing news may have been a blessing in disguise for M.E. sufferers all over the country.
Yours sincerely
drjohngreensmith@mefreeforall.org (drjohngreensmith@mefreeforall.org)
Dr John H Greensmith
ME Free For All. org
-------------------- m2f --------------------
North London ME Network
Read this topic online by going here and logging in to the members area.
-------------------- m2f --------------------
