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Information about NICE committee members

Discussion in 'Advocacy Projects and Campaigns' started by Michiel Tack, Nov 11, 2018.

  1. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I've summarised some information about the appointed NICE committee members in the attached pdf-document. I've focused on committee members with a BPS-bias, and did not delve into the lay members and ME-experts.

    This thread can be used to challenge or verify the information in the pdf-document and to add extra information about the NICE appointments.

    I hope that general discussion about the appointments, problems with the NICE process and discussion about strategies to adress these issues will be posted in other threads such as these:


    A letter has allready been written about the conflicts of interest of committee members Murphy, Daniels and Bond-Kendall demanding a partial exclusion regarding CBT/GET. It can be viewed here: https://www.s4me.info/threads/letter-to-nice-concerning-the-gdg-committee.6618/

    I'm currently working on a letter regarding committee member Chris Burton (due to ill health it will take me a couple of days though). As a MUS-proponent he denies that ME/CFS is a real disease. People with such opinions should not be on a ME/CFS guideline committee IMHO. Additional information about Burton, that is not yet provided in the pdf-document, would be very much appreciated.

    Edit: This document focuses on papers, books and published opinions. Personal information about the committee members is not considered relevant and I urge everyone to respect these persons privacy.
     

    Attached Files:

    Last edited: Nov 11, 2018
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  2. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Thank you @Michiel Tack for all the work you are doing in collating this important information.
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    Well said. I endorse this 100%.
     
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Re C. Burton
    Been having a look. He has worked quite a lot with Sharpe...haven't counted how many papers but there are a fair few.
    There is this with:
    • Burton, C.
    • Knoop, H.
    • Popovic, N.
    • Sharpe, M.
    • Bleijenberg, G.
    http://eprints.whiterose.ac.uk/120507/

    his association with Per Fink might be something given recent protests and past history re Karina (?)

    Current state of management and organisation of care: Medically Unexplained Symptoms, Somatisation and Bodily Distress; developing better clinical services
    P Fink, C Burton, J deBie, W Sollner, K Fritzsche
    https://abdn.pure.elsevier.com/en/p...agement-and-organisation-of-care-medically-un

    from the ABC of MUS:

    ABC of MUS C Burton.jpg


    ABC of MUS C Burton 2.jpg
    pretty clearly shows that he subscribes to the deconditioning model

    http://book.masaratcom.com/library/20130929101455_masarat_library_-1119967252Unexplained.pdf

    (I haven't gone thro the whole book yet)
     
    Last edited: Nov 11, 2018
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  6. Barry

    Barry Senior Member (Voting Rights)

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    Many thanks @Michiel Tack for this. Before voting on the letter I intended to do a bit of reading up on the individuals. Having just read the section on Gabrielle Murphy, I feel deeply offended by her statements on PwME. My wife, in her quiet way, is a real fighter, and strives like this woman has no inkling of! If my wife 'pulls' a muscle in her back, she does what she always does and advises me to do in the same circumstances - don't stop doing stuff because it will just get worse, but with a bit of common sense work through the discomfort and keep things moving. To the best of her ability she does the same with her ME, within sensible pacing limits. How dare this woman suggest my wife's life has been screwed up all these years because she does not understand her own body well enough, and should try harder! So now, on top of all that, I have to be deeply offended that Murphy is on the NICE guideline committee. Aghast.

    The section on Jo Daniels pretty much sums up all that I find objectionable about Psychiatry's approach to science. Reminds me of a joke I once heard. "Why is that red light on top of that tall pylon?" "Oh, that is so aircraft don't fly into the pylon at night." "So why is the pylon there?" "To hold the light up!"

    And Joanne Bond-Kendall. MAGENTA, FITNET, EC. Says it all.
     
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  7. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    MEMarge likes this.
  8. ladycatlover

    ladycatlover Moderator Staff Member

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    Wow @Michiel Tack! That is fantastic! :trophy@I've asked husband to print it off when he has time. That must have taken such a lot of work to put together. Thank you from the bottom of my heart. :heart:
     
  9. ladycatlover

    ladycatlover Moderator Staff Member

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  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    https://www.medical.theclinics.com/article/S0025-7125(14)00028-5/fulltext
    Article Outline
    1. Key points
    2. Case 1: Ms D
    3. Introduction
    4. Definitions
    5. Pathophysiology
    6. Symptoms
    7. Case 2: Ms L
    8. Diagnostic testing/imaging studies
    9. Differential diagnosis
    10. Case 3: Mr C
    11. Management
    12. Future considerations/summary
    13. References
    Medically unexplained symptoms (MUS) are common in the primary care setting and lead to high medical resource use. Diagnostic criteria for somatic symptom disorder focus on the psychological impact of symptoms. Patients with MUS may present with a myriad of symptoms, with pain being the most common, and several named disorders with specific symptoms are included under the broad heading of MUS. Treatment of MUS is challenging, and cognitive behavior therapy is the best studied and validated specific treatment modality. In the primary care setting, a specific 6-step approach can help clinicians provide the best care for patients.

    Keywords:
    Medically unexplained symptoms, Somatization, Somatoform, Depression, Pain
     
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  11. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    If we are so fortunate as to get our concerns recognised and some are removed from being on the NICE review panel what do we see happening after?

    Who might be chosen and on what grounds? There are guidelines in place as to who qualifies. Are we hoping to include those outside the usual guidelines? Are we hoping to influence any possible suggestions of candidates?

    I think it's worth considering.
     
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  12. Barry

    Barry Senior Member (Voting Rights)

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    I'm inclined to think they will resist all arguments for reversing decisions they have now made to be honest, but it's good nonetheless that we make our objections crystal clear.
     
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  13. ladycatlover

    ladycatlover Moderator Staff Member

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    I don't think that anything we can do will remove members of the GDG. But I do think the COI stuff may make a difference. And that's where we might work on further. @Michiel Tack's work is brilliant, do please read his PDF above!
     
  14. Amw66

    Amw66 Senior Member (Voting Rights)

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    There was a twitter thread this morning re NICE panel member

    I'm rubbish on twitter and couldn' t find full thread but this may be worth checking out ( for those that understand how it works!). More of a need for Dr Speight

     
  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks @Michiel Tack - I feel like I've been struggling to find the time to read anything recently, but this is definitely book-marked for when I have a chance.
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Just going to post things re CB as I find them;
    this is the Scottish School of Primary care write up on Recognising and Managing patients with MUS (Chronic fatigue, without the syndrome, is mentioned)
    the interesting bit is that at the very end it notes that

    "NICE Chronic Fatigue Syndrome (2007, due for up-date in 2017)"

    see also:
    "
    References
    1. Rosendal M, Blankenstein A, Morriss R, Fink P, Sharpe M, Burton C. Enhanced care by general-
    ists for functional somatic symptoms and disor-ders in primary care.
    Cochrane Database of Systematic Reviews. 2013;10:CD008142.

    http://www.sspc.ac.uk/media/media_484730_en.pdf

    so maybe shows his main motivation for wanting to be on the committee(?).....although I think we'd already sussed that one out.

    @Emsho

    eta: see also
    A primary care Symptoms Clinic for patients with medically
    unexplained symptoms: pilot randomised trial
    https://www.research.ed.ac.uk/porta...ients_with_medically_unexplained_symptoms.pdf

    also done in Scotland.

    Maybe this whole MUS thing could be turned on its head; ie need for stronger diagnostic criteria in the new guidelines to prevent ME/CFS patients being classified as MUS and getting the wrong treatment(?)

    eta2:
    Core Outcome Domains for Clinical Trials on Somatic
    Symptom Disorder, Bodily Distress Disorder and Functional Somatic
    Syndromes
    http://eprints.whiterose.ac.uk/119693/1/Rief 2017 Core outcome postprint.pdf

    eta3:
     
    Last edited: Nov 12, 2018
  17. Barry

    Barry Senior Member (Voting Rights)

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    Something that I think is worth appreciating, and has only fully come home to me after writing my earlier post #6 in this thread. These people such as Murphy are much much worse than simply being inexpert in their proclaimed field. They are fake experts, counterfeit experts!!! That makes them much more dangerous. They are a real and present danger to PwME, and have just proven their ability to convince people of their supposed expertise.

    I remember watching a drama long time ago (can't remember which), where someone was listening into the emergency services' airwaves, and then turning up to road accidents as a paramedic and talking some BS talk that was convincing to lay public. This person actually had no expertise and ended up doing great harm. He was a counterfeit expert. These people claiming to have ME expertise are much the same.

    As I put in my introductory post to S4ME, and my post #6 above, my wife is why I know for sure they are so much on the wrong track and are (mis)treating people based on deeply flawed self-proclaimed expertise, backing each other up so it looks convincing. The self-fulfilling circular-logic endorsements of these people's supposed expertise is frightening, simply by virtue of the fact it can and is happening.

    We need to way to expose very clearly how this claimed expertise is in fact counterfeit, because it poses a huge risk to PwME. It's very good that @Michiel Tack's letter to NICE addresses this, and the more we can expose the fake expertise for the sham it is the better. I hope NICE appreciate the significance of what the letter is saying in this regard, because it is crucial.
     
  18. NelliePledge

    NelliePledge Moderator Staff Member

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    Burton is the MUS Trojan horse in this process. Those working in CFS ME clinics are last weeks chip paper as far as BPS big guns are concerned it’s all about transforming it into generic MUS now.
     
  19. chrisb

    chrisb Senior Member (Voting Rights)

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    Perhaps it always was. It's just that it was a long term plan.
     
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  20. Barry

    Barry Senior Member (Voting Rights)

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    Not had a chance to dig into this yet, but my initial worries are that:
    • A person deeply involved with MUS (=>BPS) is a much more nebulous issue to tackle than someone involved with ME/CFS a la BPS.
    • ME/CFS, as @Jonathan Edwards clarifies, is itself a collection of symptoms that at this time are medically unexplained. I fear the waters are going to be muddied by this 2nd letter, at a time they absolutely must not be.
    • I worry that a possibly much less convincing 2nd letter re MUS, from the same author as an extremely convincing 1st letter re ME/CFS, might lessen the credibility of the first letter. I would hate for that to happen.
    There are times that it is wise to cut your losses, for risk of provoking much greater losses. Leaving CB unchallenged might just come down to that, unless a very simple and very strong case (not needing very many words!) can be achieved.
     
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