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Guidance for commissioners of services for people with medically unexplained symptoms - 2017

Discussion in 'PsychoSocial ME/CFS News' started by Sly Saint, Jan 21, 2018.

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  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Woolie, Justy, Inara and 7 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Membership of the committee producing this included: Mind and Rethink Mental Illness.

    They seem like pretty docile Establishment bodies to me. Maybe it would be worth trying to engage them in discussion about their representation of patients concerns. I wonder what expertise they claim to have with MUS?
     
  3. Trish

    Trish Moderator Staff Member

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    Thanks for posting this @Sly Saint. I've read it. It's dire.

    Basically it's the BPS crew trying to take over all the symptoms and syndromes they call MUS and have clinical commissioning groups in the UK commission 'services' that are generic teams of therapists of every description doing directive CBT on us all. If we get rid of ME/CFS services, this is what is planned to replace it. I gather it's already happening. They use PACE as part of the justification for it.
     
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  4. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    All this document says to me is that doctors are no longer taught how to diagnose anything and they aren't worth the air they use.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree. It is complete and utter b****cks.
    They say 45% of patients in rheumatology outpatients have MUS. 95% of the people I used to see had reasons for their symptoms that were not too hard to track down.

    It seems they are trying to persuade commissioners to set up brand new MUS services. I just wonder how many people are going to be prepared to be given an appointment for the 'you are nuts and there is nothing wrong with you clinic'. I think this might just fall flat on its face.

    Surprise surprise they think we need a multidisciplinary team.
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  6. strategist

    strategist Senior Member (Voting Rights)

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    Maybe the 45% is to be understood as target. :eek: I'm pretty sure CBT until the patient loses hope and gives up costs less than rheumatology appointments.
     
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  7. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    I am always surprised by the passive aggressive psychotic comments like this, that always seem to appear with anything related to MUS / SOLK / BDS

    Haha, those crazy little girls, with their periods, boyfriends, ovaries and emotions no wonder they are sick all the time.

    Ah yes, the sicker you are, the crazier you are likely to be


    I don't get how its 2018 and people still believe in this nonsense.

    The literature they cite as ''explanation'' for MUS is even worse - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083258/

    Thank god they don't expand on that in this guidance

    If you live in the UK you have to fight this idiocy as much as you can. Once this sort of stuff sticks, like in Denmark or The Netherlands, it is incredibly hard to get rid off.
     
    Last edited: Jan 22, 2018
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Patients with MUS are more likely to attribute their illness to physical causes, rather than lifestyle factors.

    More than who? More than people with broken legs or psoriasis? And in what sense are lifestyle factors not physical causes? Are going to bed late, drinking too much, sleeping around, eating bacon, or lying on a sofa purely mental events?

    You can't make it up can you.

    I think it may be a problem in Denmark because of all that bacon. And the Dutch are into weed - purely mental weed that is.
     
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    This is what worries me about the NICE guideline review. It could so easily go the wrong way.....
     
  10. MeSci

    MeSci Senior Member (Voting Rights)

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    Do you mean cannabis?
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, sativa type.
     
  12. MeSci

    MeSci Senior Member (Voting Rights)

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    Ah - quite a few pwME are into weed too - it can help.
     
  13. Adrian

    Adrian Administrator

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    It could but there is no evidence for MUS no science to back it up so I think they won't go that direction. But expect them to slip in a MUS guideline which is contradictory to the ME one but claims the same space. (Have they already started on that?). I'm saying slip in because they will hope to form their own 'committee of friends and believers' as its the only way they can get away with the lack of evidence in their argument.
     
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  14. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I hope you're right @Adrian .... I'm not sure lack of evidence will stop 'em if they think they can get away with it.

    We will need to watch for slyly crafted language that is open to interpretation ....
     
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  15. Adrian

    Adrian Administrator

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    My assumption is that they are scared of their work being ripped apart by patients in the same way PACE was. But they may feel they can get away with it.
     
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    And it seems that they're already successfully underway with doing this at NICE.
     
  17. Sean

    Sean Senior Member (Voting Rights)

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    I have a bad feeling about this.

    The medical profession in the UK increasingly looks like a cult, and that never ends well.

    No disrespect to those in it trying to do the right thing.
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    It does feel like the whole project is too big to fail. So many of the people whose job it is to call 'bullshit' are mixed up in it, and so many outsiders don't want the career risk of being involved in 'controversy'.
     
  19. Allele

    Allele Senior Member (Voting Rights)

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    It is unspeakably insane the way the so-called "medically unexplained symptoms" construct blames the sufferer for the failings of current medical sciences.

    How is this even a Thing? How are there enough people to give it traction?

    You'd think sensible people would shy away from furthering this crazy charade, but...sigh.
     
  20. Sean

    Sean Senior Member (Voting Rights)

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    The whole UK establishment has been co-opted, compromised, and corrupted by this appalling nonsense, sometimes willingly, and allowed it to become firmly embedded at the core of governance.

    Almost none of them come out of this looking good, and the whole outfit is obviously unfit for its alleged intended purpose.

    Hence, of course, they are all very reluctant to admit what has occurred under their watch.

    God forbid the ruling class should be seen to have failed their noblesse oblige. Imagine what the ungrateful peasants will think of them. :nailbiting:
     

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