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'Medically unexplained symptoms' (MUS, PPS, SSD) : Time for NICE to review the 'evidence'?

Discussion in 'General Advocacy Discussions' started by Sly Saint, Nov 22, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    6,854
    Location:
    UK
    I posted this on another thread

    NHS site on MUS:
    https://www.nhs.uk/conditions/medically-unexplained-symptoms/

    NICE:
    https://www.evidence.nhs.uk/search?q=medically+unexplained+symptoms

    one listing at last link:
    https://patient.info/doctor/medically-unexplained-symptoms-assessment-and-management


    We all know that those responsible for most of the bad research on ME/CFS are also regarded as the 'experts' on MUS and churning out more and more research using the same 'formula' and spinning the results.

    Now NICE appear to have understood the problems with this type of research for ME, it's high time they took an equally thorough look at the evidence for 'MUS et al.'
     
    JaneL, Barry, Kitty and 17 others like this.
  2. Kirsten

    Kirsten Established Member (Voting Rights)

    Messages:
    59
    Absolutely. I'd wait until the ME NICE guidance has been confirmed and we see they've not walked it back. But i would hope we wouldn't forget those still stuck in the MUS disaster, and continue to fight for them too.
     
    JaneL, Michelle, alktipping and 8 others like this.
  3. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    7,677
    Quite. No point labouring the point too much to them about how many gigantic cans of worms they will be opening if this guideline goes through as we hope it will. I know they will have a good inkling, but no point making it more obvious until past the point of no return.
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    6,854
    Location:
    UK
    that still includes us

    eta: ie ME/CFS is included and 'treated' as MUS
     
    Last edited: Nov 25, 2020
    Kirsten, rvallee, Trish and 4 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    7,494
    Location:
    Canada
    Oh for sure. 90% are undiagnosed. This won't change any time soon. It may take years for basic knowledge to filter through. Meanwhile most will be subjected to the void of MUS/FND. Change will help those diagnosed and recognized, but most won't be as long as this monster hangs around.

    Resetting things on ME is only one part. The entire psychosomatic paradigm needs to be extinguished, it won't be safe until it is done and gone. It wouldn't take much, simply removing the many exemptions that allow psychosomatic "research" to be published despite not meeting any scientific standards. But it will be a huge fight for years to come.
     
    Kirsten, Simbindi and Peter Trewhitt like this.

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