Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Get PACE removed from clinical guidelines – sign the petition!

Discussion in 'Phoenix Rising Articles' started by Sasha, Nov 24, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Sasha submitted a new blog post:

    Get PACE removed from clinical guidelines – sign the petition!

    Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET ...

    [​IMG]

    A brand-new and crucial #MEAction petition has just been launched, opening a new front in the rapidly escalating battle to protect ME/CFS patients from the misleading results of the PACE trial and similar studies.

    The PACE trial was a £5 million UK trial, published in The Lancet, whose authors claimed that it showed that cognitive behavioural therapy and graded exercise therapy were beneficial for patients with chronic fatigue syndrome.

    Patients have long criticised the trial’s poor methodology and bizarre analyses. That's including a threshold for recovery of physical function that is so low that it is below the level of disability required to enter the trial. This level is similar to the average for patients with Class II congestive heart failure.

    The study authors abandoned their planned main outcome and recovery analyses partway through the trial and replaced them with new ones. Results according to the original analyses were never published, and all requests for them have been denied.

    “I’m shocked that The Lancet published it ... The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”
    Dr. Ronald Davis, Stanford University

    Patients’ concerns have been ignored, but a damning exposé of the trial published online at the end of October by public health expert and journalist Dr. David Tuller brought the criticisms to the attention of the scientific community.

    Dr. Tuller’s articles started an avalanche of events (see timeline below this article) that many patients hope will result in seeing PACE thoroughly investigated and re-analysed.

    [​IMG]

    Now patient-advocate Mary Dimmock’s important new petition calls for all treatment recommendations based on PACE and other Oxford-criteria studies to be removed from the Centers for Disease Control's medical education material.

    It also asks for a revision of the recent 2014 evidence review by the Agency for Healthcare Research and Quality (AHRQ) in the light of the problems with these studies: the review can be referenced in any country’s clinical guidelines to support the use of CBT and GET.

    Although the petition focuses on U.S. outputs, these are internationally influential, and affect ME/CFS patients all over the world. Patients everywhere will also benefit from the petition succeeding, because it also calls on the U.S. Department of Health and Human Services to request that The Lancet have the PACE data independently analysed. This will add to the pressure to reveal the results according to the originally planned analyses.

    As Mary Dimmock says in the petition, “The UK’s £5 million PACE trial has been hugely influential in bolstering the incorrect view that the debility of ME/CFS is the result of false cognitions, a ‘fear of activity,’ and subsequent deconditioning. This view informs how patients around the world are treated in the media, by society, and especially in medical practice.”

    “It’s a mass of un-interpretability to me ... All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.”
    Dr. Jonathan Edwards, University College London

    This petition follows an earlier record-breaking petition by #MEAction calling on the journals — including The Lancet — that published important PACE papers to retract misleading analyses. The petition gained over 10,000 signatures in just over two weeks and will play an important part in the days to come.

    Events are now fast-moving, and this new petition is vital in ensuring that the U.S. government health services recognise the serious problems with PACE and similar studies, and that they take immediate action to protect ME/CFS patients both at home and overseas from the known harms of graded exercise therapy.

    So, please sign the petition right now from anywhere in the world and share it widely with friends, family, and anyone you can reach. PACE is falling, and its collapse will bring the “false illness beliefs” model of ME/CFS down with it.

    This is a crucial moment in our history and it’s time to take action.

    Sign the petition!

    [​IMG]

    PACE is falling: Timeline


    October 21, 2015: Dr. David Tuller publishes damning critique of PACE on popular Virology Blog.

    27 October, 2015: PACE authors publish null long-term follow-up PACE data but claim that it shows benefits of their therapies.

    27 October, 2015: UK media report the authors’ claims uncritically, with headlines claiming that ME/CFS patients “can overcome symptoms of ME with positive thinking and exercise.”

    27 October, 2015: Well-known American psychologist Professor James Coyne is outraged by one of the PACE authors' comments about patients in the media and tweets that he “will lay waste to PACE.”

    27 October, 2015: The UK’s Information Commissioner orders the PACE authors to provide raw data from the study requested by a patient by 1 December, 2015, or face contempt of court unless they appeal by 24 November.

    28 October, 2015: #MEAction launches major petition for the retraction of misleading results in PACE and the re-analysis of the data.

    29 October, 2015: James Coyne publishes his criticism of the latest PACE paper on his high-profile PLOS blog.

    30 October, 2015: PACE authors publish a response to Tuller’s criticisms, which Tuller rebuts.

    1 November, 2015: Well-known UK psychologist Professor Keith Laws publishes criticisms of the new PACE paper on his blog.

    4 November, 2015: When PACE authors decline to debate James Coyne about the trial on the health information website National Elf Service, the “no bias” site instead publishes a 4,500-word article praising the study by Professor Sir Simon Wessely, who describes the PACE authors as “personal friends” and says, “It would be nice to think that perhaps we can now all move on.” Coyne urges a boycott of the site.

    4 November, 2015: Tuller continues his series of PACE exposés (here, here and here).

    6 November, 2015: Laws continues to blog critically about the study.

    9 November, 2015: After receiving over 1,200 critical comments, the Daily Telegraph reverses its stance with a new article: “It's too good to be true that exercise can help Chronic Fatigue Syndrome sufferers.”

    11 November, 2015: Coyne addresses the scientific community on his blog, explaining why the PACE raw data must be released.

    13 November, 2015: #MEAction petition breaks all records by reaching 10,000-signature target in 16 days.

    13 November, 2015: Six prominent scientists publish an open letter to The Lancet, saying that PACE “suffered from major flaws that have raised serious concerns about the validity, reliability and integrity of the findings.” They call for independent re-analysis of the raw data.

    13 November, 2015: Patient and journalist Julie Rehmeyer publishes an article critical of PACE on high-profile news analysis website Slate.

    16 November, 2015: James Coyne declares “the moral equivalent of war” on the practices and assumptions that allowed PACE's “bad science” to go unchallenged by scientists and the media, at a public talk in Edinburgh (slides and video available).

    18 November, 2015: Twelve ME/CFS organisations, including Phoenix Rising, sign an open letter to the HHS, CDC and AHRQ asking for them to act to protect patients in the light of criticisms of PACE and the other Oxford studies.

    18 November, 2015: #MEAction launches Mary Dimmock’s petition supporting the call from the organisations.

    Sign the petition!

    Support Phoenix Rising

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

    And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising's Donate page by clicking the button below.

    Donate


    Continue reading the Original Blog Post
     
    Last edited by a moderator: Nov 26, 2015
    lycaena, Chezboo, Artstu and 15 others like this.
  2. Jennifer J

    Jennifer J Senior Member

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    Hi, @Sasha, thank you, thank you for all your advocacy, and everyone else I thank you for all your work and efforts on our behalf. I'm so thankful for everyone involved to change this and make it better in any way that they can. (And my heart and thoughts are with everyone who can't. People care and are fighting for us.)

    Sasha or anyone else, if you have the energy, no worries if you don't have it for this, I have a question. My memory can't remember which petitions I've signed. I will from here forward try to keep a list. Is there a way to know what I have signed in the past or if I sign again will it let me know I already did so?

    Thank you.
     
    AndyPandy, Ritto, justy and 5 others like this.
  3. Sasha

    Sasha Fine, thank you

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    Thanks, Jennifer!

    Some petitions will bounce you if you've already signed but some won't.

    @searcher, do you know whether, if this petition doesn't prevent duplicate signatures, there'll be any data-cleaning to remove duplicates at the end?

    It's unusual for one major petition on a similar topic to follow so quickly on the heels of another but #MEAction have launched two major petitions tackling PACE in recent weeks. Both are necessary: they're going after two different but very important aspects of PACE. The first was to get misleading analyses withdrawn and re-analysis done: this new one is about protecting patients from being harmed by the results, and leveraging the powerful HHS to do so.

    But yes, some potential confusion for our foggy brains!
     
    Jennifer J and Scarecrow like this.
  4. justy

    justy Senior Member

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    Signed.
     
    Jennifer J and Sasha like this.
  5. E-Beth

    E-Beth

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    Thanks @Sasha

    The "earlier record-breaking petition by #MEAction calling on the journals — including The Lancet — that published important PACE papers to retract misleading analyses"

    is actually still open. Every signature will help.

    For more information and to sign please go here: http://my.meaction.net/petitions/pace-trial-needs-review-now
     
    Jennifer J and Sasha like this.
  6. Sasha

    Sasha Fine, thank you

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    Thanks, @E-Beth - that other one is indeed still on the go but we need focus specially on this new one now to get it shifting. It's been slower out of the gate than the other one because it hasn't yet had its own publicity wave, but that's starting now and I think we can expect to see it go gangbusters.

    Just got to get it rolling, so sign and share! Sign and share! :)
     
  7. Sasha

    Sasha Fine, thank you

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    Picking up already!

    1,200! And with our internationally recognised petition units where :star: = 1,000 and :rocket: = 100, that's:

    :star::rocket::rocket:
     
  8. medfeb

    medfeb Senior Member

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    Thank you, Sasha!
     
    Scarecrow and Sasha like this.
  9. Nielk

    Nielk

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    Just to clarify; the petition was written and started by advocate Mary Dimmock. The MEAction platform which offers free use for the ME/CFS community for news, petitions and polls, was used by Mary.
     
    rosieness, Jennifer J and Sasha like this.
  10. rosieness

    rosieness

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    Thank you for this, Sasha. Brilliant campaigning, brilliant summary and a great resource. Thank you, too, Mary and MEaction. I'm fully signed up.
    This is just a tiny detail but wonder whether a title something like ' Now there's a call for HHS in US to investigate PACE. Sign the NEW Petition!' might help distinguish it from the UK petition at the outset.
    Thanks again to all.
     
    Scarecrow and Sasha like this.
  11. Sasha

    Sasha Fine, thank you

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    Thanks, rosieness - I think we do have a problem distinguishing this from the earlier petition and that's a good idea. I'll see what we can do.
     
    rosieness likes this.
  12. rosieness

    rosieness

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    Sasha
    Thanks, rosieness – I think we do have a problem distinguishing this from the earlier petition and that's a good idea. I'll see what we can do.

    Thanks, Sasha.
     
    medfeb and Sasha like this.

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