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Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

Discussion in 'General ME/CFS News' started by Esther12, Sep 11, 2017.

  1. Esther12

    Esther12 Senior Member

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    I've just been asked to post these documents up, and it sounds like David Tuller got them via an FOI request, and is planning to publish a blog on them later this afternoon. It looks like it will take a few posts to get everything uploaded, so bear with me!

    Looks like there's some annoying stuff in there.

    edit: Here is Tuller's blog http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports/
     

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    Last edited: Sep 11, 2017
  2. Esther12

    Esther12 Senior Member

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    Finished in two posts only!
     

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  3. Cheshire

    Cheshire Senior Member

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    Tuller's article published: http://www.virology.ws/2017/09/11/trial-by-error-the-nice-topic-expert-reports/

    Very concerning about any update of NICE guidelines...

    Commentator #6 is called "an apparent CBT/GET hardliner" by Tuller
     
    Maggie21, Joh, Cinders66 and 24 others like this.
  4. Valentijn

    Valentijn The Diabolic Logic

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    Never thought I'd say this, but Tuller is too nice sometimes. Myself, I'd classify #6 as "an idiot with his head firmly wedged within his own posterior" :wide-eyed: I'm not sure how else they could so completely fail to comprehend basic science, the understanding of diseases in general, and the vast amounts of biological ME research.
     
  5. lilpink

    lilpink Senior Member

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    Nothing like being 'comprehensive' ..as in it really is nothing like being comprehensive!
     
  6. lilpink

    lilpink Senior Member

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    I'm opening a book on #1 and #6 being White and Crawley.... :nerd:
     
  7. Cheshire

    Cheshire Senior Member

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    Reading more from #6:
    I'd be tempted to agree with you.
     
    Maggie21, Joh, ladycatlover and 11 others like this.
  8. trishrhymes

    trishrhymes Senior Member

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    I got as far as the bit in the first document that said they reviewed all the new evidence since the last review and the only study they though worthy of further consideration and comment by the 'experts' was FITNET. I can't bear to read any more.

    WTF.

    Compare this with the 3000 studies the US looked at in their review.

    I despair.

    Good article by Tuller.

    Bad news for us in the UK.

    NICE is a very very bad joke. I'm not laughing.
     
  9. Barry53

    Barry53 Senior Member

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    Still sounds quite polite to me ...
     
  10. Cheshire

    Cheshire Senior Member

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    Bad news for more people, US and UK guidelines are influencial beyond their territory. Maintaining the NICE guidelines as they are would be a very negative sign and allow psychobabblers to cite it extensively and be a conterpart for the IOM report...
     
    Joh, Jan, ladycatlover and 15 others like this.
  11. alex3619

    alex3619 Senior Member

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    I would have to conclude this comment from number one cannot be genuine unless the person is so clueless they should never have been consulted ... and should never be allowed to treat patients with CFS or ME for that matter.
     
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  12. NelliePledge

    NelliePledge plodder

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    so after all the fuss about not releasing names in Expert 5 which is the patient rep doc2 there are 2 first names unredacted - Amanda and Rosa

    needless to say all the medics names are fully redacted
     
  13. Valentijn

    Valentijn The Diabolic Logic

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    Yes, anyone calling themself an expert, or allowing others to do so, has an ethical duty to know what the hell is going on in their own field. That level of ignorance is an embarrassment to NICE and the NHS.
     
    alkt, Maggie21, Joh and 22 others like this.
  14. Cheshire

    Cheshire Senior Member

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    Yes, either this commentator is not aware of the controversy, and this person can hardly be considered an expert

    Or this person is purposely denying a controversy exists in a wesselian manner (move along, nothing to see here) and this is truly dishonest.
     
    Maggie21, Joh, Jan and 20 others like this.
  15. snowathlete

    snowathlete

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    it could be any one of half a dozen individuals in my opinion, but I think we deserve to know so we can scrutinize their conflicts of interest and whether their level of expertise are appropriate for them to comment.
     
    Joh, Jan, ladycatlover and 14 others like this.
  16. Chrisb

    Chrisb Senior Member

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    This raises an interesting question to which someone may know the answer.

    An express comment such as that should automatically exclude someone from being consulted as an expert. If NICE nevertheless consider and take into account his/her views do they remain compliant with their regulatory duties? Presumably they cannot select experts on a whim and will have a protocol to follow. Is that protocol in the public domain?
     
  17. A.B.

    A.B. Senior Member

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    Post on Tuller's article, not just here.
     
    Joh, ladycatlover, Solstice and 8 others like this.
  18. Binkie4

    Binkie4 Senior Member

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    "The questionnaires, which were often only partially filled out, were sent to me as separate documents." (david Tuller)

    I was struck by the fact that the topic experts did not complete the task set, and that Nice seems to have waved this by.
     
    Maggie21, Jan, ladycatlover and 12 others like this.
  19. sarah darwins

    sarah darwins I told you I was ill

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    Nicely spun, huh? "... increasing acceptance", implying delusion across the pond. They just can't help themselves.
     
    Maggie21, Joh, Jan and 15 others like this.
  20. BurnA

    BurnA Senior Member

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    @charles shepherd Are the MEA in a position to write to NICE about the quality of their experts?
    Or more precisely, the quality of evidence provided by their experts, and that science does not support the claims?
     

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