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Trial by Error: NICE Declines to Disclose Names of Experts

Discussion in 'General ME/CFS News' started by Kalliope, Jul 24, 2017.

  1. Kalliope

    Kalliope Senior Member

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    David Tuller: The Countess of Mar has received a negative response to her request for the names of the experts involved in the review of the NICE guideline for CFS/ME. The ME Association has not yet received a response related to the same question, nor have I. But the response to the countess indicates that the process is proceeding with a lack of full transparency.

    Blog post
     
    johnnydme, MEMum, GreyOwl and 26 others like this.
  2. dangermouse

    dangermouse Senior Member

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    "Is it the group that originally developed the 2007 guideline? That group includes Professor Trudie Chalder, one of the key PACE investigators"

    No wonder the experts are being kept hidden!
     
  3. sarah darwins

    sarah darwins I told you I was ill

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    So, we're reliant on a couple of FOI requests which will not be responded to until after the deadline for consultation. ie. when it's too late. What a surprise.
     
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I wonder if it's worth pursing asking the appropriate people at NICE the reason WHY it's important to have 'experts' names withheld? I'd like to know the answer to that.
     
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It seems to be reasonably transparent. It is the same people again, if we are to believe what IAPT says.
     
  6. sarah darwins

    sarah darwins I told you I was ill

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    I suspect it's because NICE often does have to make difficult decisions about which drugs to fund and which not.

    This is such an unusual situation, though, where the crux of the issue is a highly controversial therapy. If the 'expert' panel is heavily salted with those who developed and have promoted that treatment, that is obviously unacceptable. In this instance, the names should have been public from the start.
     
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  7. dangermouse

    dangermouse Senior Member

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    I am horrified by this revelation. How is this allowed to happen? This is people's lives that they are messing with. It really is disgraceful.
     
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    All the same I'd like to have them say it out loud (so to speak). I doubt that the reasoning can be defended in the case of CBT/GET therapy.
     
  9. Esther12

    Esther12 Senior Member

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    Great to have Tuller continuing to explore and raise issues with the way NICE works.

    I feel like the 'answer' is even more absurd when you see the question it followed:

    How could that pass for an attempt at a real answer?

    It's more of Sir Humphrey evading 'who is responsible for this?'

     
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  10. Dolphin

    Dolphin Senior Member

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    I'm not sure that is correct.

     
  11. Esther12

    Esther12 Senior Member

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    Oh yeah - that half stood out to me, but it was before my time.

    Jessica Bavinton from PACE is there though, and Esther Crawley.
     
    Last edited: Jul 24, 2017
  12. Hutan

    Hutan Senior Member

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    Maybe the Countess could ask another question to find out something about the composition of the team doing the review? For example, what percentage of the team has been involved in research that has found GET or CBT to be an effective primary treatment for ME/CFS or CFS?
     
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  13. Dolphin

    Dolphin Senior Member

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    Or are employed offering the therapies
     
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  14. mango

    mango Senior Member

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  15. Stewart

    Stewart Senior Member

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    She could ask if any of the members of the expert group declared a conflict of interest, as required by NICE's Code of Practice, and if so how many of these CoIs were personal non-financial interests relating to the effectiveness of CBT or GET as interventions (Page 6).
     
    Jan, MEMum, ScottTriGuy and 12 others like this.
  16. dangermouse

    dangermouse Senior Member

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    I'm not familiar with JB but EC stands out like a sore finger.
     
  17. Valentijn

    Valentijn Senior Member

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    Jessica Bavinton is a physiotherapist who helped write the PACE GET manual, from what I recall. She was involved in the NHS/Talkhealth online clinic for ME/CFS 4 years ago, where patients got to ask questions, and were basically told to shut up if they disagreed with the answers or asked for sources.

    Based on her comments, she seems to be both a GET fanatic and a complete idiot. She contributed an impressive 4 false statements out of the top 10 I refuted in an article about the online clinic. For example, she confidently claims that GET results in increased activity, despite several trials showing that it doesn't, and no trials showing that it does.
     
  18. dangermouse

    dangermouse Senior Member

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    Thanks @Valentijn

    The article is eye opening. Just when you think you have seen it all.....:bang-head:
     
  19. Valentijn

    Valentijn Senior Member

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    Even more disturbing ... it was seen as progress at the time, because the online clinic happened at all :p I think we'd be showing up with torches and pitchforks if some of those tactics were employed today.
     
  20. dangermouse

    dangermouse Senior Member

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    That's for sure :p
     
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