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Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

Discussion in 'General ME/CFS News' started by Andy, Aug 29, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    @Cheshire first posted about this here, but I thought it was important enough to warrant its own thread.

    https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/
     
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Hope I am not being naive, but this reads as a very positive step forward by Action for ME.
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Definitely a step in the right direction (and about time) however;
    "We will learn from our past mistakes"
    "According to BACME, specialist NHS M.E./CFS services should advocate collaborative work, patient-led goals and support to stabilise physiological patterns of rest, sleep, movement and diet. At the same time, psychological/emotional support should be offered, aimed at supporting patients to come to terms with being diagnosed and/or living with the condition, and to understand the factors and behaviours (eg. doing too much) that jeopardises that stabilisation.

    We fully support this approach".

    BACME:
    "
    Once a diagnosis has been made, patients should be considered for further evaluation to
    see if they would benefit from the evidence based treatments (CBT–cognitive behaviour
    therapy and GET–graded exercise therapy).
    Where these specialist services are not available, rehabilitation using those principles
    (as described later in this guide)."

    "
    The aim of a rehabilitation plan is to regulate bodily systems and to begin to
    desensitise a heightened level of sensory processing inside the body by doing a small amount (a baseline) of activity and achieving a better balance of rest in all areas of activity in daily life. Having
    achieved this, the challenge is to then gently build up activity over time thereby re-educating the body and increasing tolerance for exertion."

    https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf
     
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  5. strategist

    strategist Senior Member (Voting Rights)

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    Sonya Chowdhury says:

    Looks like a step forward. Although they don't explicitly condemn GET and appear to still leave room for it or similar approaches.

    There is no credible evidence that GET is truly effective, so they should just say that they don't support it due to lack of credible evidence combined with consistent reports of harm. Simple as that.
     
  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Superficially it’s welcome, at this time it removes an unhelpful leg of support from underneath the establishment, trying to maintain status quo. However as above, quoting the BACME , staunch promoters of GET, CBT and PACE trial I think, undermines it a bit.
    I would say over this time MRC position has moved from bascically supporting the CBT model AFME rejects here, to now being open to biomedical research for some of the CFS spectrum which they support through the CMRC. This move, which is just a change of beliefs really, just isn’t enough. And organisations like MRC have to recognise that this behavioral CFS narrative they supported that filled text books, journals and media needs to be visibly rejected for the world of science to u turn as we need.
     
    Last edited: Aug 29, 2018
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  7. John Mac

    John Mac Senior Member (Voting Rights)

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    I think this is the best thing about the statement. Can PACE claim to have any patient support now?
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    So now AfME have said (in a roundabout way) that they do not support PACE and its conclusions, will they now similarly condemn Crawleys research (MAGENTA, FITNET-NHS and others) as it all heavily relies on PACE as justification for its existance.
     
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  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I think this is really welcome and thank @Action for M.E.

    I would just point out that the support for the trial was from before 2007. It started in 2002 with a letter of support to the MRC and the first meetings of the TSC were in 2004.
     
  10. Alvin

    Alvin Senior Member (Voting Rights)

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    Just recently they were defending the indefensible now they have seen the light...
    Sure. :whistle:

    This sounds like damage control.
     
    Last edited: Aug 30, 2018
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    They will need to be judged by their future behaviour, not their words.
     
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  12. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    I agree that:

    - The statement is a welcome step in the right direction
    - It is a mistake to endorse BACME

    I would add that it is possibly unwise to endorse any part of the NICE Guideline at this stage (even a part which is acceptable).

    In the past I have asked @Action for M.E. to acknowledge its mistakes and apologise. I thank Sonya for doing this. However, I would have liked her to apologise to everybody for the harms that AfME has caused rather than only to “those who feel that [AfME] have caused harm”. This may seem pedantic but:
    1) People will have been harmed who are unaware of the issues and AfME’s involvement. They deserve an apology too.
    2) It is important for AfME to acknowledge that harm that has been caused, not only that some people may feel that harm has been caused. [Edited]

    Thanks to AfME for listening. I hope this will be a on going process.
     
    Last edited: Aug 29, 2018
  13. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I don't think that's fair. They've always disputed the PACE trial's findings.

     
  14. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    One thing un said is, for all his obvious faults with PACE, sir Peter spencer in 2011 did ask the MRC to continue ring fenced funding until the field was established. He said the amount put in so far was tiny compare to need. They refused and since then, including under Sonya, that hasn’t been asked again until recently. I agree significant biological research funding from years ago could have put us in a different place now.
     
  15. Alvin

    Alvin Senior Member (Voting Rights)

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    Yet it took considerable pressure to get to todays statement. Not science.
    They play both sides with statements like "Some people tell us that they find GET and/or CBT useful" then mentioning criticisms. There are other examples but this one is off the top of my head. Playing both sides doesn't make for accuracy, facts make for accuracy.
    Play me once shame on you, play me twice shame on me...
     
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  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I found Hannah Fry's programme on game theory (BBC4 yesterday) very interesting in that regard...
     
  17. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't know of this program, can you tell us more?
     
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  18. Trish

    Trish Moderator Staff Member

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    This looks like a major turn around.

    I note they say they will review their resources and information. I hope that will be done very quickly - they have a responsibility to patients to withdraw immediately any information on their website, training for doctors etc that does not reflect this new approach.

    @Action for M.E. please convey my thanks to AfME for this significant turnaround. And please also pass on my concern about the statement that review of materials may take some time. I agree that it's important not to rush to rewriting everything and get it wrong again. But I think in the meantime any materials that are dubious should be withdrawn . Better no information than incorrect information.

    I also share the concern expressed above about the endorsement of BACME. They are far from perfect - including for example having one of the worst proponents of the BPS approach as a speaker at their recent conference.
     
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  19. Lucibee

    Lucibee Senior Member (Voting Rights)

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    There's more info at the link, but in summary, being in perpetual conflict benefits no-one.
     
  20. Alvin

    Alvin Senior Member (Voting Rights)

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    My bad, i didn't realize there was a link in your reply (f lux software orangeing out the screen)

    I agree but trust is earned, not given away. I look forward to more then the first step in that journey.
     
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