Another ME group supports suspension of trials (UK)

Discussion in 'Fibromyalgia Main Forum' started by tansy, Sep 9, 2005.

  1. tansy

    tansy New Member

    Please feel free to repost.

    9 September 2005

    The 25% ME GROUP supports suspension of PACE and FINE Trials

    The 25% ME Group is the only ME charity specifically supporting
    severely affected sufferers of ME (ICD10: G93.3). We represent the
    interests of severely ill ME patients, many of whom are so ill that
    they are totally bedridden, some of whom are wholly dependent on carers
    for the basic functions of daily living and others who are lucky enough
    to be able to leave home in a wheelchair occasionally.

    The 25% ME Group is pleased to learn that the ME Association is calling
    for the PACE trials to be suspended and would like to add its voice in
    support of this call.

    We would also call to include the FINE trials in this suspension. These
    are aimed at the severely affected and are using techniques that are
    wholly inappropriate to the house and bed bound sufferer

    We would also agree with the MEA statement, based on feedback received
    from members that:

    “We find it extremely disturbing that the evidence so far points to the
    main influence in the newly created CNCCs to be psychiatric and would
    ask for more input from Patient groups in the running of these centres
    and a move away from the outdated and harmful methods of treatment i.e.
    CBT and GET.”

    We demand and expect the MRC to fund research into the physical causes
    of ME and to withdraw funding from the psychiatrically influenced PACE
    trials and from centres promoting CBT and GET as treatments for the
    physical illness ME.

    We deplore the fact that the two promising genetic research studies
    being conducted by Dr John Gow (Scotland) and Dr Kerr (England) are
    having to be funded through patient support groups and charities.

    We also take this opportunity to call upon the "Wessely School"
    psychiatrists to acknowledge the wealth of research that discredits
    their view of ME as a 'somatic disorder', including but not limited to
    research into cardiac abnormalities, genetic abnormalities,
    immunological abnormalities, neuroendocine abnormalites and vascular

    25% ME Group
    21 Church Street
    KA10 6HT

    [This Message was Edited on 09/09/2005]
  2. Smiffy

    Smiffy Member

    Thankyou for posting this tansy.I am a member of both the 25% ME (CFS) & the ME (CFS) association group, am so glad they are making a stand against this outrage. It is appalling that all our goverment's miserly research funds are being spent on dangerous nonsense.
  3. Rosiebud

    Rosiebud New Member

    thanks for this. I see the 25% ME Group has a branch in Scotland now, I have been thinking of joining them.

    Can you please tell me what the FINE trials are, I had a look on their site but couldnt see it. It's probably staring me in the face too.

  4. elsa

    elsa New Member

    After I read this article I was so thrilled for ME
    patients in the UK. It looks like more and more groups with
    high knowledge credibility are taking an agressive, verbal
    stand against the Wessely School psychiatrists.

    I still struggle with their arrogance and greed at the expense of seriously ill individuals who can't always fight for themselves.

    With the 25%ME Group and ME Association speaking so strongly against the lack of appropriate funding and the forced use of "outdated and harmful methods of treatment ie
    CBT and GET", maybe the latest research and treatment plans will have a chance to come to the surface. With that,
    perhaps more patients have a chance of regaining quality of life.

    Are there any updates on the hearings? Please forgive my memory this morning, but I can't recall if the needed
    hearings are actually scheduled to take place or if it is still in the "fight to get scheduled" phase.

    Thank you for keeping me informed with this. What happens to one ME/CFIDS patient happens to all ME/CFIDS patients .... In my way of thinking, it doesn't matter what
    country we patients reside in.

    Take care,


  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  6. tansy

    tansy New Member

    what happens in one country can affect everyone else worldwide. An example of this is the manner in which insurance companies respond to claims based on ME/CFS, it is through the insurance companies that the psychologisers made such an impact.

    I have not checked out progress on the Parliamentary Inquiry that's been requested, even if it goes ahead it is essential that the real specialists and researchers are given an opportunity to put the record straight here.

    Unfortunately Action for ME (AfME) are seen as speaking for us, they support the psychologisers and have benefitted financially through their involvement in PACE. AfME no longer fund research and seem to think it's acceptable to act as our representatives in the full knowledge that so many of us do not agree with their activities. AfME do not have a membership in the true sense of the world, just subscribers, who have little or no say in AfME's policies.

    AfME was once active in campaigning and providing info on anything that might help PWME/CFS. How times have changed!

  7. tansy

    tansy New Member

    Hi Rosie

    FINE is for those too ill to attend the new CF Centres for CBT and GET. Instead a trained nurse is sent to their homes and no prizes for guessing what they will have to offer.

  8. shelbo

    shelbo New Member

    Don't mean to sound ignorant...but what are the PACE and FINE trials?
    Just to update you...I feel much worse since I started GET and am wondering how to get out without A) jeopardising my chances of future treatments that may become available and B) seeming uncooperative.....benefits stopping etc... I haven't been to the last two sessions. The last time I went I felt very patronised by the leader (who has written supporting GET)..every time I voiced a concern I was met with the words..'Now Michelle, you have to hear me.' I wish s/o in the medical field would hear me for once!

    Love Shelbo
  9. tansy

    tansy New Member

    the research trials being funded by the MRC, DWP etc; the intention is to prove CBT and GET (treatments for functional somatic disorders) can cure us. This trial involves comparing it with pacing in which programmes of activity and rest periods are worked out for the patient, unfortunately pacing done this way does not allow for the ebbs and flows of ME/CFS.

    FINE, as I explained to Rosie, is for those too ill the attend the CF centres. Once again treatments and recomendations will be based upon the above.

    If GET is making you worse you need to make it clear. Write to your MP explaining what is going on, he may be able to intervene on your behalf regarding concerns over future treatments and allowances. It's also very important our MPs know the claims being made over GET's success are misleading.

    You should also let the ME Association and the 25% group know, even if you're not a member, they want feedback in order to be able to demonstrate why PACE is a waste of money and just as harmful as they have reported.

    Grrrr, I hate that kind of patronising ignorance and it's not acceptable. Dr Shepherd regularly reminds doctors their insurance cover means they have to take as much care over prescribing exercise as meds; it might help to quote this.

    Unfortunately at some of these centres patients are dealing with blind ignorance, anything patients complain about is supposed to be ignored because to do otherwise would be pandering to their false illness beliefs.

    Well I am having physio (PT) through the NHS for my cervical spine issues. Good PT as far as this is concerned but you can no doubt guess what some of his comments have been. It does not help the the rheumatology dept, here who requested the PT, all think exercise is the answer to ME/CFS; when it fails - well you know the score. It's made me worse in the past but apparently that's irrelevant.

    love, Tansy

    [This Message was Edited on 09/11/2005]

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