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NICE guideline classification of ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 18, 2014.

  1. charles shepherd

    charles shepherd Senior Member

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  2. Sasha

    Sasha Fine, thank you

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    A "frank and robust" discussion! Excellent. That's exactly what was needed. Well done and thank you, @charles shepherd. You've removed an insulting and damaging categorisation from us.

    It's not an insulting thing to say that someone has a mental illness, of course: but it is insulting to say that someone who has an organic disease only imagines that they do and that their illness consists entirely or mostly of this false belief, which some people in the NHS appear to think.

    Thank you, and many thanks to the Countess of Mar.
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  4. Sean

    Sean Senior Member

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    Seems to me like a substantial win for us. And a substantial loss for the BSPers. :)

    Changes like this can have important long term consequences.
     
  5. xchocoholic

    xchocoholic Senior Member

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    I'm in the US so I'm not exactly sure what this means.

    Does it mean that CBT and GET will no longer be recommended as the treatment for me/cfs in the UK ?

    Tx .. x
     
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  6. Sasha

    Sasha Fine, thank you

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    No, but it does mean that anyone who goes to the NICE (National Institute of Health & Clinical Excellence) website looking for information about ME/CFS won't have an authoritative UK medical body implying that it's a mental illness because of where they've placed us on their website.

    It's a disgrace that it ever happened and it's a disgrace that it's stayed like that.
     
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  7. xchocoholic

    xchocoholic Senior Member

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    Thanks. So where do medical professionals in the UK go for guidelines on how to treat me/cfs patients ?
     
  8. Calathea

    Calathea Senior Member

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    And what do you do if your GP is taking advice from a functional neurologist who states that ME is *not* a neurological disorder, or indeed a physical one? I'm trying to change to another GP in the same practice, but explaining why I'm doing so will be impossible.
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    If only...I think that change will be harder to achieve. When that has been achieved, life should change dramatically for us, and the changes should reverberate around the world. And by rights someone should lose his knighthood. I say 'should' rather than 'would' or 'will', as justice can be very hard to achieve.

    However, the NICE recommendation that these should be used are at least hard(er) to justify now.
     
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  10. Sasha

    Sasha Fine, thank you

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    To NICE, I think, although they might seek additional sources. However, I don't think the content of any of the recommendations has changed, just the section where ME/CFS sits on the NICE website.

    That's not a small thing, though, in my view. It was a big thing that they miscategorised it on their site and blindly classed it as a mental health issue in the first place.
     
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  11. ukxmrv

    ukxmrv Senior Member

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    All this does is mean that if one searches the NICE website under "conditions" the CFS guideline document collection will only appear now with the neurological collection (whereas before it was appearing under two classifications, the mental health one and the neurological).

    At some time NICE re-arranged their website and started putting all the guidance collections of documents under different sections. CFS ended up under two at the same time. Not sure when this happened or for how long it was like this. When the CFS gudelines were first put on the NICE website in around 2007 it was then not split into conditions and I don't know when this happened. Someone only noticed in 2014.

    The actual crappy guideline set of documents are exactly the same.
     
    Last edited: Oct 19, 2014
  12. xchocoholic

    xchocoholic Senior Member

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    Tx. I did a quick google and found that too. Rats.
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I think that much/most of the guideline is OK. It's the treatment section that is seriously flawed and causing the problems for patients.
     
  14. ukxmrv

    ukxmrv Senior Member

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    What part of the Guideline do you think is OK then?

    At the time patients sent in replies, criticism and contributions to many different parts of it. It made no difference at all.

    We complained about the wording to the original brief from the DOH to NICE at the very start as we could see that the focus would be on treatment and that would be a disaster they way that they would evaluate them.
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't have time to look at it again in detail, sorry. But I was thinking of the classification as neurological and the general descriptions re symptoms, onset, etc.
     
  16. worldbackwards

    worldbackwards A unique snowflake

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    To be fair, that isn't true. The original draft was appalling, it basically stated that patients didn't want to recover and looked like it had been dictated directed by Wessley and White inc.

    The finished guideline made substantial changes. It's a long time since I read through it (to be honest, life really is too short and even I've got better things to be doing), but my memory is that it's not terribly bad in describing the illness, except when it gets anywhere near criteria, investigations and treatments, at which point the psychiatrists get whatever they want - it's a classic fudge, where patient feedback is acted on just enough to hopefully keep them quiet whilst the strings are still being pulled by the same people.

    From the lengthy article by Professor Malcolm Hooper, Eillen Marshall and Margaret Williams:
    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
     
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  17. ukxmrv

    ukxmrv Senior Member

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    If you could go through the draft and finished guideline that would be appreciated @Wastewater but I appreciate that life is too short.

    I don't think that the section you quoted supports your argument. There were no substantial changes that I saw and that part you quoted doesn't talk about substantial changes in the patients favour. The Guideline was about diagnosis and treatment.

    Arguments about causality and the Psych supposedly "losing" that argument were never going to change the Guideline because the initial brief from the DOH was not about that. So claiming that we patients had a victory there isn't as relevant as one would hope.

    Saying than an individual plan must be agreed with the only options are CBT and GET/pacing/activity isn't a substantial change IMO. It's the difference between an individual plan with CBT etc and an individual plan with nothing. A substantial change to the original draft would be one that allows patients access to treatments of their choice (as an example).

    None of the recommendations in any of the patient submissions that I was a part of or that I saw were incorporated into the end guideline and we patients did sent in responses to the draft.

    I don't think Hooper or patients would have been involved in the NICE Guideline High Court case in such a prominent way if the GDG had made substantially changes to the Draft Guideline or if the Psychiatric lobby hadn't influenced the GDG to get what they wanted to a large extent.

    Criteria, diagnosis and treatment is the guts of the guideline. That is where they won.
     
    Last edited: Oct 20, 2014
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  18. worldbackwards

    worldbackwards A unique snowflake

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    I'd agree with that last point, the guidelines are clearly shabby and cop out completely whenever they get anywhere near something really important. Neither was I saying Hooper actually approved of the finished article.

    But I do think it's important, in that it reflected a moment where the psychiatrists weren't getting everything their own way. The original descriptions of patients were essentially contemptuous (I seem remember a passage in the draft about 'When the patient wishes to recover', etc), whereas in the finished guideline there was an admission of the severity of the illness and that the causes were 'unknown'. Whether it made that much of a difference in the way patients are treated is debatable (and probably unlikely), but at least the casual observer might not think that this was no big deal.

    I would say that not saying that the illness is a behavioral disorder and that the treatments should not be considered curative is a start. To that extent, the submissions had some impact. Not nearly enough, but it's going to be a long fight and you can't expect to win all at once.

    And we will win.

    Eventually...

    On another point, it always struck me that the High court review failed because they took on the definition of the illness rather than the treatments. Experience has proven that definitions tend to wriggle from your grasp. It may be clear to us that there are only basically two - physical and psycho-social - but the latter was twisted so many ways in the High Court that Peter White ended up getting himself defined as a bio-medical researcher.

    It would have been much more sensible to concentrate on treatments and ask, if there is a split over whether CBT and GET work or not, why was the entire GDG composed of it's advocates, except the patient representatives who could be easily over-ruled as partial in the face of overwhelming support for the treatments.

    It may have looked more satisfying to try and expose the BSP club for the nasty little ideological clique it is, but I thought it was tactically flawed and so it proved.
     
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  19. eafw

    eafw Senior Member

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    Hopefully this is a small step forward. Perhaps at least patients in the UK can go to their GP and say this illness is classified as a neurological one - so why would you want to send me for treatment in a unit managed by psychiatrists who go against NICE guidelines by declaring it an anxiety disorder ?
     
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    They could, but I doubt if it would get them anywhere. I expect that it would merely elicit the hostile reaction we usually get, in that this is all that is available; take it leave it.
     

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