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AfME Board of Trustees statement on CBT, GET and PACE - 16th May 2017

Discussion in 'General ME/CFS News' started by AndyPR, May 16, 2017.

  1. AndyPR

    AndyPR Senior Member

    Well, they have finally woken from their slumber to issue these words of wisdom.
    https://www.actionforme.org.uk/news/board-of-trustees-on-cbt-get-and-pace/
     
    justy, Tyto alba, ahimsa and 18 others like this.
  2. user9876

    user9876 Senior Member

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    I think this shows that they do not understand that the published results are simply unreliable and don't hold up to objective tests. The published findings don't support the use of CBT or GET as reliable treatments,
     
  3. AndyPR

    AndyPR Senior Member

    Translation, "thankfully we have waited long enough that we now think we have a justifiable reason not to sign".

    Obviously the fact that they would be showing their support to the patients by signing is not of concern for them.

    Also, no mention of Crawley's anti-science talk at all.
     
    justy, snowathlete, Jan and 24 others like this.
  4. Molly98

    Molly98 Senior Member

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    What a cop out, but did we expect anything different?
    We should have put bets on what reason they would give for not signing.
    They were always going to remain sitting on the fence refusing to nail their colours to the mast.

    "Two months ago, an open letter to the journal Psychological Medicine, co-signed by a substantial number of scientists, and supported by patient organisations in the UK, US and Europe, asked that the journal retract its 2013 paper, Recovery from chronic fatigue syndrome after treatments given in the PACE trial.

    As reported by the New York Times, the journal has said it has “no plans to retract the study but is open to publishing a re-analysis of data in any papers it has published.” Therefore signing now will have no impact."

    Wrong AFME, signing would have shown the patients and carers you claim to represent that you stand united with them and all the other ME charities, researchers, clinicians in taking a stand against this research that has done us great harm. It would have shown us that you put our interest first over and above whatever other conflicts of interests there may be within AFME of a personal/relational nature because let's face it, there must be. What other reasonable conclusions can one come to when you are the only ME charity worldwide that has to take 2 months deliberating and then comes out with a pathetic excuse like this.

    By not taking a stand you have shown us clearly that you do not represent the interests of ME sufferers or carers and you do not stand united with the ME community, other ME Charities, researchers and clinicians.
    You are not fit to represent ME sufferers at any level and should stop claiming that you do.

    what a joke

    and it took two months to think up that response
     
  5. user9876

    user9876 Senior Member

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    So basically they are saying they don't believe in campaigning to change anything. If someone says that is they way it is then they are not going to try to change it.

    Why do I find this worrying. They issue a statement that demonstrates that they don't understand the issues around CBT/GET and claims that they cure but then want to engage with NICE. I think if they don't understand they should just shut up. If they feel they have a strong argument they should demonstrate that they understand the issues and present their views rather than just a statement trying to avoid saying anything
     
    snowathlete, Jan, Dolphin and 18 others like this.
  6. trishrhymes

    trishrhymes Senior Member

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    Hmm. A step in the right direction perhaps. Or not. :(

    They say they will revise their advice to patients in the light of the data reanalysis and patients' experience. I think we need to hold them to that and watch what they actually do.

    It all feels a bit wishy-washy. Some people find this, some people find that...

    A lot of stuff about wholeheartedly supporting collaborative research without any mention of MEGA.

    And as for saying the journal says it won't retract a paper so we won't sign a letter asking them to - what a pathetic excuse. If we all acted that way, no change would ever happen. :bang-head::bang-head::bang-head:
     
    lemonworld, Jan, JaimeS and 20 others like this.
  7. dangermouse

    dangermouse Senior Member

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    They say they want to move forward with research and funding into biomedical research - which is what we all want, as long as it's appropriate.

    They feel the continuing debate over PACE is preventing this from happening, so they'd like that to stop? - The inclusion of EC and her continued fondness for PACE-like trials is the problem.

    There is silence, once again, regarding the recent presentation at a renal conference by EC.

    They say they are listening to ME patients but they don't address the issues that pwME are reporting and this is frustrating.
     
    Jan, JaimeS, Skycloud and 14 others like this.
  8. AndyPR

    AndyPR Senior Member

  9. Yogi

    Yogi Senior Member

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    This is a non-response and just waffle.

    Let's remember they needed to do 2 simple things for ME patients

    1. Sign the Open Letter to Psychological Medicine that every other charities have signed
    An open letter to Psychological Medicine, again! by D Tuller et al

    2. Make a statement and condemn Esther Crawley's smear campaign of patients and David Tuller.
    Crawley: How to deal with anti-science BRS2017

    As expected they have done neither. They took 2 months to make a non statement on the first issue and did not even refer to the second issue.

    Now AFME need to be exposed for their conflicts of interest and double dealing.

    Can we update this saga on AFME's MEPedia page for the record?
     
  10. Yogi

    Yogi Senior Member

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    JaimeS, Jo Best, lilpink and 7 others like this.
  11. Yogi

    Yogi Senior Member

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    Olivia Rowe How can AfME genuinely support pwME whilst continuing to work so closely with the PACE team? While they continue to conflate Chronic Fatigue and fatiguing conditions with ME they do actual harm to our community - particularly children. We hear many stories of how children who are unable to participate in GET become the subject of care proceedings. How can AfME tolerate this abuse of very ill people?
    2 · 6 mins
    [​IMG]
    Giles Meehan Very weak response.
    2 · 11 mins
     
    Woolie, JaimeS, Jo Best and 7 others like this.
  12. Binkie4

    Binkie4 Senior Member

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    I think comments and 'likes' expressed here need to be replicated on the AfME site.

    They will then reach a group of people who may not access this site and the views of a far wider range of people will be seen.
     
    Valentijn, Jo Best, lilpink and 5 others like this.
  13. Yogi

    Yogi Senior Member

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  14. BurnA

    BurnA Senior Member

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    That's the telling line. Move on folks nothing to see here.
     
  15. AndyPR

    AndyPR Senior Member

    This is what I see right now
    Screen Shot 2017-05-16 at 10.55.33.png
     
  16. Yogi

    Yogi Senior Member

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    AFME Said:
    Anyone who is challenging the bad science of PACE trial is preventing biomedical research taking place.

    This is GASLIGHTING AND VICTIM BLAMING (in the manner of Simon Wessely) by a patient charity ACTION FOR ME.!!!!

    THIS IS A SCANDAL. WHAT ARE WE GOING TO DO ABOUT AFME??
     
    starlighter, Jan, Webdog and 13 others like this.
  17. Yogi

    Yogi Senior Member

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    5 · 31 mins
    [​IMG]
    Molly Morriss What an absolute cop out. Very disappointed, infact not just disappointed but angry that AFME does not have the integrity as an organisation, to be honest, and clear and act in a way which wholly represents and fights for the ME sufferers it claims to. Signing would have shown the patients and carers you claim to represent that you stand united with them and all the other ME charities, researchers, clinicians in taking a stand against this research that has done us great harm. It would have been an ACT of solidarity. It would have shown us that you put our interest first over and above whatever other conflicts of interests there may be within AFME of a personal/relational nature because let's face it, there must be. What other reasonable conclusions can one come to when you are the only ME charity worldwide that has to take 2 months deliberating and then comes out with a pathetic excuse like this.

    By not taking a stand you have shown us clearly that you do not represent the interests of ME sufferers or carers and you do not stand united with the ME community, other ME Charities, researchers and clinicians.
    You are not fit to represent ME sufferers at any level and should stop claiming that you do.

    what a joke

    and it took two months to think up that response?
    Just now
     
    Woolie, Jan, Webdog and 13 others like this.
  18. Yogi

    Yogi Senior Member

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    Kathryn Fenn It's a shame you didn't sign the letter along with most other resend scientifists and bodies, including I think possibthe leading United States ME /CFS charity before then isn't it? Having the charity who worked with the PACE researchers on the design and Implementation of the trial openly criticise the spun results and changed methodology etc might have been a useful addition

    I disagree with not signing now and think it's copping out or not wishing to stand against certain quarters of the UK medical profession.

    "That is why Action for M.E. actively supports investment in collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to better treatments, and hopefully a cure. "

    What investment and what research is this - the only thing i see on the agenda in the UK was the MEGA project which didn't get funding.
    1 · 1 min
     
    Jan, JaimeS, Jo Best and 7 others like this.
  19. Yogi

    Yogi Senior Member

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  20. Yogi

    Yogi Senior Member

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    Our Board of Trustees on CBT, GET and PACE
    May 16, 2017

    In April, our Board of Trustees met to discuss Action for M.E.’s position on a range of key issues relating to our work.

    This includes a number of serious concerns raised by our supporters and others in the M.E. community that:

    • there is a continuing emphasis on behavioural treatments for M.E., despite it not being a mental health condition
    • their personal experience of these treatments does not reflect published findings supporting the use of cognitive behavioural therapy (CBT) or graded exercise therapy (GET) as reliable treatments for people with M.E.
    • their questions about these issues have not been adequately addressed.
    Action for M.E. shares these concerns, and would like to make the following clear.

    CBT and GET

    Action for M.E. does not recommend any single form of intervention or treatment for M.E.

    The wide range of experiences reported to us by people with M.E. show that the symptom management approach most commonly cited as helpful by people with M.E. is pacing, though it does not provide benefit to all. Some find GET and/or CBT helpful; others find they make no difference, or make their symptoms worse.

    On this basis, Action for M.E. does not support a blanket approach to the provision of CBT and/or GET.

    The fact is that there are no treatments that offer reliable and significant improvements for people with M.E., and we still face the issue of not knowing enough about the biology of M.E. to target treatments appropriately. Lack of investment in research and specialist healthcare provision for M.E. leaves large numbers of people with M.E. unable to access the support they desperately need.

    This is absolutely not good enough, and it must change. That is why Action for M.E. actively supports investment in collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to better treatments, and hopefully a cure. We will continue to work to ensure that voices and experience of people affected by M.E. and CFS lie at the heart of this.


    The PACE trial

    The PACE trial, the only large-scale research trial undertaken to test the effectiveness of CBT, GET and pacing as treatments for people with M.E., has been subject to considerable scrutiny and criticism since publication of its initial results in 2011.

    Action for M.E. supports evidence-based research, including critical analysis of, and scientific debate about, published findings. Our Board has already stated that Action for M.E. actively supports the sharing of research data to enable replication and validation, and we now require all researchers we fund to agree to undertake this.

    Following the release of anonymised data from the PACE trial, a December 2016 paper published in the peer-reviewed journal Fatigue: Biomedicine, Health and Behavior concluded that "the claim that patients can recover as a result of CBT and GET is not justified by the data."

    Repeated questions continue to be raised by researchers, clinicians and people with M.E. who have concerns about the methodology and conduct of the trial, its clinical value, and the impact on patients who feel that their concerns have been dismissed.

    Action for M.E believes that:

    • it is vital that valid questions, raised about the science conducted as part of the PACE trial, be addressed as a matter of urgency, and that the experiences of the patient community are not ignored
    • a review of the NICE guideline must take full account of emerging biomedical research, the views and experiences of people with M.E., and clearly reflect nuances around findings and re-analysis related to the PACE trial
    • the field must move forward by bringing in new researchers, more funding for biomedical research, and more effective engagement with policy makers. The focus on the scientific debate around the PACE trial above all else is preventing this from happening.
    Two months ago, an open letter to the journal Psychological Medicine, co-signed by a substantial number of scientists, and supported by patient organisations in the UK, US and Europe, asked that the journal retract its 2013 paper, Recovery from chronic fatigue syndrome after treatments given in the PACE trial.

    As reported by the New York Times, the journal has said it has “no plans to retract the study but is open to publishing a re-analysis of data in any papers it has published.” Therefore signing now will have no impact.

    What Action for M.E. is doing

    We will support the ongoing scientific debate around the PACE trial by:

    • actively disseminating updates relating to this on our website and social media
    • revising our information on GET, CBT and pacing to reflect these.
    We will be proactive in engaging with the National Institute for Health and Care Excellence (NICE), reiterating the need for an urgent review of its guideline on M.E. in the light of continuing gaps in the evidence base for effective treatment, and scientific debate about the findings of the PACE trial.

    We will continue to focus on meeting the needs of people affected by M.E. every day, and taking action to secure change for the future, by:

    • sharing targeted information and support, and reducing isolation, to improve the lives of children, families and adults affected by M.E.
    • raising awareness and understanding of M.E. and its impact among professionals, policy-makers, parliamentarians and the public
    • consulting with people affected by M.E. about their experiences of care and support, and working with professionals and decision-makers to increase access to appropriate health and care services, employment and education support, and welfare benefits
    • investing in pilot projects to bring new researchers to the field, and playing a leading role in driving new collaborations to increase interest and investment.
     

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