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Analysis of research funded by UK bodies and assessed in the NICE guideline process?

Discussion in '2020 UK NICE ME/CFS Guideline' started by Andy, Sep 1, 2023.

  1. Andy

    Andy Committee Member

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    A thought inspired by the currently ongoing UK consultation on ME/CFS - has anybody compared the research funded by the UK funding bodies since 2013 and assessed in the NICE guideline process to see the quality of evidence provided by those studies? My immediate assumption is no.

    In the consultation documents, the MRC and NIHR like to list how much they have spent on ME/CFS research, but there is never an analysis of the quality of research funded, and it is far easier for me to ask if anybody has done that already than to actually do it.

    If anybody could suggest a way for me to mine the data from the NICE evidence review documents that is less effort than ploughing through it all manually I'd love to hear it. :)
     
    JellyBabyKid, Ash, Simbindi and 12 others like this.
  2. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Hi Andy,
    I think an easier way to approach this is to look at quoted funding for CFS, as it has been called!

    https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-29#post-448354
    for a list from 2011

    https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406653
    Post #8 from CRG, includes at least one earlier one from 2008

    Also relevant is that funding for key players, such as Crawley and the King's lot is covered by their "overall research funding", not specified against individual research efforts see #8 and #44 on second thread
     
  3. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I have done some work on this and obtained info via a JLA person.

    If I can locate it, I will see if it adds anything to the above, But we are away for a couple of weeks from Friday and have a crazy week when we get back!
     
    Ash, alktipping, Simbindi and 2 others like this.
  4. Andy

    Andy Committee Member

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    Thanks. In the consultation the figures listed are, since 2013, MRC, £4.15 million (including £3.19 million for DecodeME), and NIHR, £3.9 million (not including DecodeME). Looking at the figures from CRG that you link to suggests that none of that spending resulted in evidence of any use in the NICE guideline review.
     
    JellyBabyKid, Ash, CRG and 6 others like this.
  5. CRG

    CRG Senior Member (Voting Rights)

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    FWIW I'm confindent the lists I drew up were complete to that point. Pretty damning that none of that spending produced anything useful for a NICE review, something I'd not previously given thought to.
     
    Binkie4, Ash, rvallee and 7 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    The same can be said of the £50M spent on Long Covid. It delivered absolutely nothing of value, but no one seems concerned by this, instead it's used to justify spending no more, even asserting that there's nothing to be found, even though the effort was mediocre and some of it blatantly wasted by funding deniers.

    It's as if failure is expected and no one thinks that there's any need to change anything even though they keep spending billions with nothing to show for it. I'd be surprised if, just in the UK, total funding for "research" CBT or other generic-fluff-for-generic-ailments isn't well above £1B already. And it's literally all the exact same, but they keep funding it anyway and the sunk cost keeps rising so they'll keep funding it until it's ended from the top.

    Easy to see why medical research delivers so little. The usual excuse is that medical research is expensive, but no one ever seems to stop and think about why it is, and this careless attitude is obviously a major factor, if not the main one. When failure is rewarded on a mass scale, you get failure on a mass scale. The complete lack of leveraging, of economies of scale and the excessive redundancies are not normal, and they sure as hell aren't inevitable natural disaster.
     
    Last edited: Sep 4, 2023
    obeat likes this.

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