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Join call by 12 ME/CFS Orgs to HHS to act on PACE concerns: MEAction petition

Discussion in 'General ME/CFS News' started by medfeb, Nov 18, 2015.

  1. medfeb

    medfeb Senior Member

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    Phoenix Rising has signed, along with 11 U.S. ME/CFS organizations, a letter calling on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) to investigate the PACE trial concerns raised by David Tuller, other researchers and many patients and then take the steps needed to protect patients.

    Take Action
    You can add your voice by signing this accompanying petition. While the petition is directed to the CDC and AHRQ, their response will affect other countries as well, so we encourage people from all countries to sign.

    Background
    PACE is hugely influential in how patients are treated in the media, by society, and especially in medical practice. In the U.S., many ME/CFS clinical guidelines, including those of the Centers for Disease Control and Prevention (CDC), recommend CBT and GET, based in part on the PACE trial.

    This is true even in medical education and clinical guidelines published since the 2015 Institute of Medicine (IOM) report. One updated guideline combines the IOM criteria for diagnosis with PACE-based recommendations for CBT and GET and also links poor prognosis to illness belief.

    The impact of PACE is also seen in scientific evidence reviews. In 2014, the U.S. Agency for Healthcare Research and Quality (AHRQ, part of HHS) recommended CBT and GET, based in part on PACE, which it ranked as a “good” study. This is significant because the AHRQ Evidence Review can be used to support CBT and GET recommendations in future journal articles and in the clinical guidelines of any country. This evidence review already has been used for this purpose in at least one U.S. clinical guideline.

    Even aside from concerns with the conduct of PACE, the AHRQ Evidence Review recommendation for CBT and GET for all ME/CFS patients is questionable since the evidence review itself acknowledged that PACE’s Oxford definition was overly broad and could include patients who do not have ME/CFS. NIH’s 2015 Pathways to Prevention report felt this problem was so serious that it called for the Oxford definition to be retired.

    Continuing to use PACE and similar Oxford definition studies to support treatment recommendations for all ME/CFS patients is an issue of grave concern because it confuses doctors on the nature of the disease and results in medical treatment that can harm patients.
     
    Ellie_Finesse, mango, moosie and 26 others like this.
  2. Nielk

    Nielk

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    Signed.
     
  3. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    signed and tweeted.
    :)
     
    snowathlete likes this.
  4. duncan

    duncan Senior Member

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    Signed.
     
  5. medfeb

    medfeb Senior Member

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  6. snowathlete

    snowathlete

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    signed and shared.
    important to keep the pressure up. I think the authors of PACE hope this will all go away, but it won't.
     
    catly, SOC, Sidereal and 3 others like this.
  7. Scarecrow

    Scarecrow Annie Gsampel

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    SIgned
     
    catly and Sasha like this.
  8. Sasha

    Sasha Fine, thank you

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    Signed and emailed to ten friends.
     
    catly and snowathlete like this.
  9. aimossy

    aimossy Senior Member

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    signed
     
    catly, snowathlete and Sasha like this.
  10. Sasha

    Sasha Fine, thank you

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    Let's get those rockets going!

    :rocket: = 100
    :star: = 1,000

    So far we're well over :rocket:!

    Well done to the Phoenix Rising board - @Mark, @Jonathan Edwards, @Butydoc, @adin - for signing the supporting letter.
     
  11. Valentijn

    Valentijn The Diabolic Logic

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  12. A.B.

    A.B. Senior Member

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    Brilliant. I think in the US there is much more willingness for serious PACE trial slaying. This petition could actually succeed.

    Signed and sent to friends and family.
     
    catly, SOC, Mary and 3 others like this.
  13. Sasha

    Sasha Fine, thank you

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    I've got a lovely new signature supporting the petition - help yourselves, anyone who fancies copying it!

    Good way to get the message out across the forums. Not everyone reads particular subforums.
     
    searcher, catly, snowathlete and 2 others like this.
  14. daisybell

    daisybell Senior Member

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    Signed and shared. Nearly at :rocket::rocket::rocket:
     
    moosie, catly, Sasha and 1 other person like this.
  15. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    done, facebooked, twittered.
     
    snowathlete and Sasha like this.
  16. Valentijn

    Valentijn The Diabolic Logic

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    :rocket::rocket::rocket:
    361 :)
     
    Sasha likes this.
  17. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Check. Check.
     
    Lyratic and Sasha like this.
  18. Sasha

    Sasha Fine, thank you

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    400!

    :rocket::rocket::rocket::rocket:

    Wondering how many we'll get before it's my bedtime...
     
    Bob likes this.
  19. *GG*

    *GG* Senior Member

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    Done. And Sasha's signature copy, not as pretty, but done!

    GG
     
    Sasha likes this.
  20. Sasha

    Sasha Fine, thank you

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    I don't know - I think yours has an understated style, whereas mine's a bit shouty!
     

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