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Call for UK people to participate in planned study

Discussion in 'Action Alerts and Advocacy' started by Jenny, Feb 22, 2010.

  1. Jenny

    Jenny Senior Member

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    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 --------------------
  2. Sasha

    Sasha Fine, thank you

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    Interesting! Having been through the NHS specialist ME/CFS service (CBT/GET/pacing) and not benefited from it, I had the same reaction to the news that one area of the country wasn't getting an ME/CFS clinic, i.e. that they might well be better off without one. Although it was nice to be able to go to a specialist clinic after over 20 years of illness with no NHS provision, I was very disappointed to get there and find that they were offering zero medical treatment and the sort of management information that I could have got out of a leaflet. I didn't allow myself to be pushed in terms of GET and to be fair to my occupational therapist there, they didn't try to push me - but I fear for those patients less well-informed, less experienced in managing their illness, and possibly under pressure from family members and friends to risk it.

    I think this study will be difficult to design - getting a truly matched sample will be difficult because it won't be just a matter of demographic matching. That is, it won't be just a matter of matching for age, sex, etc. - it will be trying to replicate the sample who would have been sent by GPs to the service in terms of their diagnosis and other (unknowable) factors. A waiting list comparison study might be a better design (i.e. you measure how people on the waiting list for the clinic do over the same time period as the sample actually undergoing treatment). I'll be interested to see how it develops, though.

    Thanks for posting, Jenny!
  3. V99

    V99 *****

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    Well I never went to a clinic (knew there were pointless) and I have definitely been better off. Although it is hell to do, I am actual able to work. Simple because I was able to pace my self, and because I had room within the disease to do this. However, I still cannot do any exercise without producing a terrible relapse. (Just in case a non believer is reading this - no I am not afraid of exercise, I love it, and no I am not deconditioned)

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