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NICE guidelines: topic experts and the behind the scenes

Discussion in 'General ME/CFS News' started by daftasabrush, Feb 3, 2019.

  1. dave30th

    dave30th Senior Member (Voting Rights)

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    this is true--although whether they WILL be ignored is the question.
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have personal emails that are confidential. I doubt Peter Barry had 'advice' as such. I understood that he was told there were rules about who could be appointed. I also think he was advised how those rules had to be interpreted but was in a position to make a case for certain appointments. Which all sounds reasonable. The state of play clearly changed over a period of months for whatever reason. It changed in such a way that I have reason to take Peter Barry's comments in good faith.
     
    Barry, ScottTriGuy, Sean and 6 others like this.
  3. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    If there are such rules, then it's rather unfortunate that these are not made public. Perhaps someone could highlight this in the NICE stakeholder engagement survey: that the procedure of selecting members of the guideline development group, should be made more transparent and explicit (I've already filled in the survey without thinking about this).
     
    Binkie4, Barry, ScottTriGuy and 2 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    They may be public. I was aware of them when I applied so I knew I did not officially qualify. I guess that means that you can access them if you go to a page dealing with potential appointment to a committee. The committee is supposed to have a certain mix of professionals and lay members. Each professional slot has a set of requirements. Thus physicians with an interest in ME need to be practicing. I do not know why they should necessarily but I can see that there may be reasons in a general context why this is a sensible requirement. My impression is that by the end of the selection process several requirements had been waived.

    As I think you realise, I am not trying to defend the current set up for the sake of it. As I have said, I have never thought much of NICE, which in my own experience was obstructive and irrational. But I think it may be unhelpful for members to think there is more of a conspiracy than there will always be in real life.

    The difficulty is how you arrive at a more rational set of 'final arbitrators'. As things are there are so few people with a deep understanding of ME around. Moreover, maintaining high standards of methodology in medicine seems to be out of fashion amongst policy makers. The overriding problem I see is not so much interference as the fact that most people, even those who might be considered experts, prefer easy options and are not always that bright.
     
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  5. Sarah

    Sarah Senior Member (Voting Rights)

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    Barry and MEMarge like this.
  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    In the context of the UK Establishment that's not deeply reassuring.

    If the system is so stacked against achieving much needed change then they should have been open about this from the start, so that we could have started to push for a reform to their systems before any appointments were made. My understanding is that they were sending out very different, and misleadingly reassuring, messages.
     
    Last edited: Feb 5, 2019
    Inara, Binkie4, JemPD and 4 others like this.
  7. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Indeed, Stanton is a threat to all families.

    Screen Shot 2019-02-05 at 6.50.05 AM.png
     
    Sly Saint, Hutan, Inara and 4 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

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    It has to be seriously hoped that the new NICE guideline CG869, "Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management", does not find its way into that list!
     
    ScottTriGuy likes this.
  9. daftasabrush

    daftasabrush Established Member (Voting Rights)

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    @ScottTriGuy that was the source of his GMC complaint, the kids wasn't even his patient! What is disturbing is the way many defended him along with other dodgy doctors, especially Roy Meadows.
     
    Inara, Hutan and ScottTriGuy like this.
  10. daftasabrush

    daftasabrush Established Member (Voting Rights)

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    @Michiel Tuch The FOIA from the Countess was about the current guidelines and topic experts involved.

    The previous ones are already public (although I'm not sure if they were before the NICE guidelines were published). You can find the list in my post higher up from Sun 2:40am - Rosalind Raine being one of the two topic experts.
     
    ScottTriGuy likes this.
  11. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    OH my God, that is terrifying... It keeps getting worse
     
    ScottTriGuy likes this.
  12. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Can I ask are people here feeling any ways hopeful about NICE review? I'm feeling more deflated by the day.
     
    ScottTriGuy and Inara like this.
  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    NICE takes a dim view of foreign work on MECFS after first consulting a third party.jpg Pass........!
     
    Last edited: Feb 7, 2019
  14. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I fail to see any humour in the situation at the moment.
     
    daftasabrush likes this.
  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Or ............ original-2370605-1.jpg
     

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