No more pacing in the UK, just CBT and GET.

Discussion in 'Fibromyalgia Main Forum' started by tansy, Mar 7, 2011.

  1. tansy

    tansy New Member

    The form of pacing used in the PACE study was not the form most patients find helpful, there is a set level of activity that must be adhered to regardless of how ill or well the patients is. Since the PACE trial's results on pacing those involved are pushing to have recommendations for pacing dropped, whilst at the same time pushing GET and CBT.

    The press release from the Sceince and Media Centre in the UK went out worldwide so whilst it's particularly bad in the UK it is already adversely affecting patients worldwide.

    The critieria for the PACE study only required the participants had "medically unexplained" fatigue for 6 months or more. They quote the London Criteria but failed to explain it was Peter White's own version that excludes the most important features of ME.

    [This Message was Edited on 03/08/2011]
  2. tansy

    tansy New Member

    Dr Derick Wade, Consultant and Professor in Neurological Rehabilitation and
    Clinical Director, Enablement Directorate, Oxford Centre for Enablement,

    "CFS is common, and it is vital to know whether treatments proposed and/or
    used are safe and are effective. Randomised controlled trials provide the
    best and only reliable evidence on safety and effectiveness of any
    intervention in any condition. The trial design in this study was very good,
    and means that the conclusions drawn can be drawn with confidence.

    "This is a very significant finding. It identifies that one commonly used
    intervention is not effective (and therefore should not be used), and it
    confirms the effectiveness of two treatments, and their safety. The study
    suggests that everyone with the condition should be offered the treatment,
    and every patient who wishes to be helped should be willing to try one or
    both of the treatments. It also means that we can allocate resources to
    treatments that will benefit patients and, more importantly, stop allocating
    treatments that do not have proven efficiency. Further research should
    identify ways that treatments derived from these may deliver greater

    "Research needs to investigate both treatments and factors that increase the
    risk of developing CFS. However, it is probably more effective to research
    treatments, and proving a treatment is effective starts to give clues about
    causative factors."

  3. tansy

    tansy New Member

    Dr Derick Wade:


    In the same year that the book by Waddell and Aylward was published, on 22nd
    August 2005 another of the Woodstock attendees, Professor Derick Wade from
    the University of Oxford and the Rivermead Rehabilitation Centre, Oxford,
    wrote to Dr Roger Thomas, Senior Medical Policy Adviser in the Benefit
    Strategy Directorate at the Department of Work and Pensions advising that -
    despite the WHO classification -- ME/CFS is not a neurological disorder but
    a "non-medical illness".

    When challenged about his views by the person about whom he had written, on
    7th July 2006 Wade replied :

    "ME/CFS is not a neurological condition in that there is no pathology in the
    nervous system."

    "The sick role does have advantages in that Society provides support to
    people who are ill. a not-inconsiderable advantage."

    "Why should all symptoms arise from disease...Even if research such as that
    on the websites you gave does find abnormalities, it does not prove a causal
    link..Why are so many people with ME so afraid of the idea that there is no

    I will end by re-stating that: I think that ME/CFS is a major
    problem for people with it and for Society but I do believe that: people
    with so-called ME/CFS do not have any disease as the primary or sole cause
    of their illness (and) it is wrong to fit ME/CFS into a biomedical model of

    Together with Professor Tim Peto (co-leader of the Oxford PACE Trial
    Centre), Professor Wade attended a meeting of the Oxfordshire Priorities
    Forum on 21st May 2008 at Jubilee House, Oxford Business Park South, the
    Minutes of which record: "There is increasing evidence from good quality
    trials to support CBT and or GET in the management of CFS/ME (and) there is
    evidence for the effectiveness in children and adults. Inpatient care for
    CFS/ME is not supported by available evidence. The Oxford PF agreed that GET
    and CBT are clinically and cost effective and should be recommended in the
    treatment of CFS/ME.

  4. slowdreamer

    slowdreamer New Member

    Tansy the ME Society here in Vic is calling for volunteers to be interviewed by a journo from the above paper who is investigating the dark side of GET..

    Volunteers are being selected because of bad experience with GET and possibly CBT.
    Could be a sensational article don't you think?

    I had a win yesterday as I saw a psychologist who had CFS herself...It was like she had landed on my planet..
    I believe it will be a helpful encounter..
    Take care with all this stuff..It must affect you
  5. tansy

    tansy New Member

    Hi Slowdreamer. The proposed article in The Australian looks promising, good news indeed.

    A psychologist with CFS herself sounds ideal, understanding the limitations this illness imposes is important because counselling requires mental activity and we are somewhat limited in how much we can do without a payback.

    I can cope with this stuff because I learned years ago to seperate it from my daily life and it's something I have a lot of experience in that goes back to before I had ME. The biggest problem is it takes energy I need for other things so they've had to be put on the shelf for now. The Internet and computers make advocacy and campaigning a lot easier than it used to be.

    Take care. x