The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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MEA website poll for November: PACE trial re-anysis and NICE guideline on ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Nov 1, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    Valentijn, Comet, Dolphin and 2 others like this.
  2. charles shepherd

    charles shepherd Senior Member

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    Current votes - the poll has only just gone up!


    • Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?
      • Yes - definitely (97%, 37 Votes)

      • Yes - to some extent (3%, 1 Votes)

      • Neutral (0%, 0 Votes)

      • Not sure (0%, 0 Votes)

      • Probably not (0%, 0 Votes)

      • Definitely not (0%, 0 Votes)


        Total Voters: 38
     
    Molly98 and AndyPR like this.
  3. Cheesus

    Cheesus Senior Member

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    I am surprised you even need to ask :D
     
    slysaint, Marky90 and AndyPR like this.
  4. charles shepherd

    charles shepherd Senior Member

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    We do now have one 'definite no' vote!
     
    Cheesus likes this.
  5. AndyPR

    AndyPR Senior Member

    Peter White's retired, it's probably him. Can't be Esther, she's heroically lapping up all the media attention.
     
  6. charles shepherd

    charles shepherd Senior Member

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    Just over 200 votes in less than 2 days:


    • Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?
      • Yes - definitely (93%, 194 Votes)
        [​IMG]
      • Yes - to some extent (6%, 12 Votes)

      • Neutral (1%, 2 Votes)

      • Not sure (0%, 0 Votes)

      • Probably not (0%, 0 Votes)

      • Definitely not (0%, 1 Votes)


        Total Voters: 209
     
    Valentijn, Comet and snowathlete like this.
  7. charles shepherd

    charles shepherd Senior Member

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    Current votes below

    This MEA website poll will close at the end of November

    Please vote if you have not already done so


    • Following the re-analysis of the PACE trial data, should NICE remove its recommendations on CBT and GET?
      • Yes - definitely (93%, 627 Votes)

      • Yes - to some extent (5%, 37 Votes)

      • Neutral (1%, 4 Votes)

      • Not sure (0%, 0 Votes)

      • Probably not (0%, 2 Votes)

      • Definitely not (1%, 5 Votes)


        Total Voters: 675
    Polls Archive
     
    Comet likes this.
  8. charles shepherd

    charles shepherd Senior Member

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    Why are we asking about the PACE trial re-analysis and revision of the 2007 NICE guideline on ME/CFS in this month’s MEA website Quick Survey?

    The ME Association has consistently held the position that the 2007 NICE guideline on ME/CFS is unfit for purpose – especially in relation to the recommendations regarding CBT and GET and the failure to endorse Pacing as a safe and effective form of activity and energy management for ME/CFS

    We have also argued that the NICE guideline has a number of other serious defects and needs to be comprehensively revised:

    www.meassociation.org.uk/2013/10/mea-opposes-plan-to-put-review-of-nice-mecfs-guideline-on-hold-23-october-2013/

    And. when a revision does finally takes place, proper weight must also be given to ‘patient evidence’ on the efficacy and safety of CBT, GET and Pacing – as is contained in the our ‘patient evidence’ report:

    www.meassociation.org.uk/how-you-can-help/introduction-to-our-cbt-get-and-pacing-report/

    Following on from the Freedom of Information (FoI) tribunal decision to release some of the PACE trial data, and the subsequent re-analysis of this data, the clinical trial evidence in support of CBT and GET can no longer be relied on by NICE,

    And as it now appears from another FoI request in relation to correspondence involving NICE, NHS England and the Countess of Mar that there will be a surveillance review of the NICE guideline in early 2017, we shall be submitting this MEA ‘patient evidence’ to NICE.

    NICE FoI correspondence:

    www.meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-research-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/

    We also believe that it will be important to accompany this ‘patient evidence’ on CBT, GET and Pacing with a survey of how the people with ME/CFS now view the PACE trial results.

    Which is why we are asking about the PACE trial and NICE guideline on ME/CFS in this month’s MEA website survey…..
     
    Comet likes this.
  9. Wildcat

    Wildcat

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  10. Cheesus

    Cheesus Senior Member

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    I would love to hear the rationale of those five people.
     
  11. AndyPR

    AndyPR Senior Member

    You mean Stephen Holgate, Esther Crawley, Peter White, Simon Wessley and Ian from Accounts who happened to be in the room at the same time.

    I also note that there is only 627 votes so far, surely making it only a vocal minority who have expressed their opinion on this?
     
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  12. Cheesus

    Cheesus Senior Member

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    Which is particularly unusual, given that a ubiquitous characteristic of any silent majority is their propensity to turnout at the polling station.
     

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