The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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VIRAS Stakeholder Comment on: The NICE Guideline CG53, Review - July 2017

Discussion in 'General ME/CFS News' started by lilpink, Jul 18, 2017.

  1. lilpink

    lilpink Senior Member

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    Permission is granted to post this far and wide. I have already posted within another thread but I felt this needed its own thread to reach a wider audience. I appreciate some people have already expressed the view that this adds nothing to the debate, but I disagree. This is a criticism / issue which has not been explored before (to my knowledge) but VIRAS, as a Stakeholder, argue a very interesting point (imo). It might not save us now ( I think we all presume NICE has tied this up behind the scenes and their request for Stakeholder opinion is simply a tick box manoeuvre ) but it adds to the weight of evidence we may, one day, want to use.

    "NICE Guideline CG53 is and always has been unfit for purpose, but NICE is not fit to conduct the review. The task must be assigned to a truly independent scientific body. NICE has demonstrated by its own conduct that they have bowed to, and continue to pander to the vested interests and undue influence of the wessely-school. The result is guidelines that have no credible scientific or medical basis influencing the medical care of thousands of seriously ill patients."


    http://counsellingme.com/VIRAS/VIRAS_NICE_comment.html
     
  2. emmaj

    emmaj

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    It's a great point and one I shall be taking up with my MP.
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    The problem is, we seriously-ill people have NO effective treatment, because enough money is not being put into research! And it hasn't for decades.
     
    Luther Blissett likes this.
  4. lilpink

    lilpink Senior Member

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    Excellent. Which is where it should be aimed....
     
    Luther Blissett and dangermouse like this.
  5. alex3619

    alex3619 Senior Member

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    While its probably close enough to true, this point, without evidence, will be portrayed as a conspiracy theory. Other similar things have been said many many times over the last decade or more, and so far nothing has come of it.

    I do think we should be claiming NICE is not fit to review this topic, but there is a more solid basis that consideration of details in papers, including whether or not the methodologies used have scientific credibility, should be mandatory. We need experts in methodology, not experts in CBT or GET or anything similar, to conduct reviews. They do not even need to be doctors, what they need to be is credible scientists.

    Even a superficial review of the CBT and GET claims should have highlighted the obvious and pervasive methodological problems. Anyone who cannot see that is arguably unfit to conduct any kind of review. Methodology counts.

    At no point has there been any convincing objective evidence these approaches work. You would think an "evidence" based review would be concerned about that.
     
    Valentijn, Solstice, Webdog and 7 others like this.

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