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The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

Discussion in 'General ME/CFS News' started by Countrygirl, Apr 20, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    Here's some heart-sink nonsense.

    A friend has just introduced me to this web site.The Nottingham Toolkit: bad news for people with ME. Here is the driving force behind the implementation of MUS, with CFS quoted as an example. Nurses are to be given four months training to cure us of our 'mental' health condition. Just look at the cost of it! Think of the research that could have funded!



    http://impact.ref.ac.uk/casestudies2/refservice.svc/GetCaseStudyPDF/28021



     
    Last edited: Apr 22, 2017
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  2. hellytheelephant

    hellytheelephant Senior Member

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    'heart sink nonsense' you said it! I would call it BS!:bang-head:
     
  3. trishrhymes

    trishrhymes Senior Member

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    What a truly appalling waste of money. It looks unstoppable.

    'Reattribution refers to an intensive structured consultation delivered by a GP, which aims to provide a psychological explanation to patients with somatised mental disorder'

    I wonder whether anyone has told them that somatised mental disorders don't exist except in the imagination of a few psychiatrists and psychologists.

    :cry::cry::cry::cry::bang-head:
     
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  4. Esther12

    Esther12 Senior Member

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    LOL - the reference for that is FINE. They took the no benefit over control result, and interpreted that as the exciting new that both the PR intervention and the control intervention would be worth delivering?!

    Some of these REF2014 sumbmissions seem a lot like fraud to me. Anyone know if there's anything that can be done about this?
     
  5. arewenearlythereyet

    arewenearlythereyet Senior Member

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    im surprised it takes 4 months of training....surely it doesn't take that long to train the nurses to tick a box on a form to say, I've retrained their brain and released them back to the community? After all there is no need to prove whether the treatment works ...so this makes it just an attendance record keeping exercise? In fact why not save more money and just do it online. That way the GP could just give a preprinted card to the patient to say attend this retraining course by following this web address...job done!

    The last page of the the training could say " congratulations you have completed the course and are now cured. Your medical records have been updated automatically, there is no need to revisit your GP. If you feel the need for further retraining please log in again for a refresher course".
     
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  6. trishrhymes

    trishrhymes Senior Member

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    Yes, I noticed that they justify using the two methods tested in the FINE trial by quoting that trial as if it showed these treatments worked! Actually what it showed was that their 'control' group with 'supportive listening' was no better or worse than their active treatment group with combined GET/CBT. In other words it was a null trial. Now they seem to be using it to say both these are treatments that work!

    Huh????

    I think this is a new low in so called science. You set up a trial with a control group, and when the trial shows no difference between active treatment and control, you declare it as showing both control and active treatment are successful.

    It gets worse and worse. This isn't science. All the other papers quoted are by Morriss and his minions, and all seem to be qualitative stuff designed to prove what they already believe.

    How on earth do they get away with this. A whole edifice of IAPT costing millions built on nonsense. And all designed to 'help' GP's to explain to patients with stuff they can't diagnose that this means it's all in our pretty little heads.

    :bang-head::bang-head::bang-head::bang-head::bang-head:
     
  7. Countrygirl

    Countrygirl Senior Member

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    Well, @hellytheelephant , you would call it BS because you are a Dorset lass, while I am a Devonshire lady. :angel: We are, of course, much more sophisticated this side of the border.
     
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  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Hmm must be a different part of Devon to the one I knows
     
  9. PhoenixDown

    PhoenixDown Senior Member

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    So it's about saving money, once again ME patients are sold down the river.

    Enhanced, my ass! I've been made permanently worse thanks to the BPS approach. Conflating ME with MUS/somatizing is dangerous for patients.
     
  10. Countrygirl

    Countrygirl Senior Member

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    Worse than that. The author has contacted my GP (I find that most strange) and instructed my doctor to send me to a fatigue clinic and arrange for me to have CBT/GET. Before the phone call my GP was supportive and 'believed' ME was a genuine physical illness although she knew little about it; however, after the call of four months ago, her whole attitude has changed and she is hostile and is proposing to take various actions that will make me much more ill. I have tried to reason with the doctor but she is adamant that ME now belongs in the mental health department. She dismissed the work of people like Fluge, Davies etc as irrelevant and not worth a candle.

    How many other surgeries are being contacted in this way?
     
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  11. Countrygirl

    Countrygirl Senior Member

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    Ha!

    Yes, to be honest, we are all muck, mud and straw yer.

    Yer us be.



     
  12. Mohawk1995

    Mohawk1995 Senior Member

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    So this may surprise a few on PR.....This is the plans for one the greatest wastes of money in the history of medicine! The disease is not psychological at its core and not even psychologically predisposed in any way. It hits people from all walks of life, ages, nationalities, sexes, levels of education and levels of income. No official data, but I might even suggest that those who develop ME actually have less mental health issues prior to illness than does the general public.

    The whole MUS thing is rather ridiculous. Note to NHS: Cant't explain it? Then work harder on physiological ways to do just that! Don't sit back on your arses and pat yourself on the back. Get out there and really work hard!

    The arrogance to suggest that just because something cannot be explained medically, that it then must be primarily psychological is plain idiocy!

    As some have suggested, the money would be better spent on practical ways to address these patients needs. Might even be better to just calculate the number of people impacted by "MUS" and hand the cash straight to them. Oh but wait, they would loose their ability to control people's lives and think more highly of themselves for "doing" so!

    At least if you going to discuss psychological issues, do it from a standpoint of trying to honestly help people cope with these devastating and confusing diseases!

    Maybe Robin Hood needs to return to Nottingham ;)
     
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  13. A.B.

    A.B. Senior Member

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    They could actually use that money to advance research and build real knowledge and effective treatments. Or at least help people that actually need mental health treatments.

    It's going to be a trainwreck, and no amount of advertising and spin will change that.
     
    Last edited: Apr 20, 2017
  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Thank you @Countrygirl that really made me smile. It's been 20 years since I lived in Devon but that really made me want to move back....luckily I have a good excuse to visit regularly.
     
  15. SamanthaJ

    SamanthaJ Senior Member

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    Probably a naive question, but where's data protection in all this? I would have assumed that only the medical staff actually treating me could access my details, certainly not complete strangers with ulterior motives...It's decidedly creepy, particularly @Countrygirl's experience.
     
  16. user9876

    user9876 Senior Member

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    I think in others Oxford and QMUL were pushing the PACE output as significant. I do wonder about these as they are essentially pushing stories of 'successful' research to gain further research funding and reputation. Perhaps that is why QMUL would spend so much money suppressing PACE results.

    I wonder if the university of Nottingham can be held legally liable (in the new commercial NHS world) for the failures of their training courses and tools when they fail to work.
     
  17. Esther12

    Esther12 Senior Member

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    I think that REF2014 played an important role in determining future funding for research, so a lot of money could have been at stake. I did try to see how much the REF2014 analysis of submissions worked, but didn't get very far. Surely there are authority figures who'd be concerned by the spin found in their submissions, but I don't know who they are or how to contact them.

    The REF2014 contact details don't look that promising: http://www.ref.ac.uk/contact/

    There was some body that looks at the misuse of public funds... maybe they'd be interested?
     
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  18. moosie

    moosie

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    Thank you for posting this @Countrygirl . It's horrific.

    (I wonder if this thread should have something along the lines of '£200 million for pychological treatment for MUS'? I only knew to read as I had seen mention of Nottingham Tool Kit mentioned on twitter. Ignor if I don't know what I'm talking about - brain fog bad)
     
  19. Countrygirl

    Countrygirl Senior Member

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    I'll put the kettle @arewenearlythereyet . :thumbsup::)
     
  20. Countrygirl

    Countrygirl Senior Member

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    Done! @moosie
     

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