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NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Nov 9, 2020.

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  1. Barry

    Barry Senior Member (Voting Rights)

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    Reading Sharpe's comment above makes me realise that being under the ministrations of a BPS psychiatrist is going to be pretty unenviable for those with genuine mental illnesses as well, if the belief is that outcomes can only be measured in terms of patients' self reporting.
     
    alktipping, JemPD, Sarah94 and 7 others like this.
  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Gerada is the RCGP's incoming President:

    https://www.rcgp.org.uk/about-us/news/2021/august/rcgp-announces-clare-gerada-as-new-president.aspx

    "Professor Gerada was College Chair between 2010-2013 and has remained on College Council as a nationally elected member since. She is currently the longest serving Council member, having been continuously on RCGP Council since 1998. Dame Clare will be the first woman for nearly 70 years and the second in the College's history to hold the position of both Chair and President..."

    "Her term in office will run from November 2021 until November 2023..."

    "The RCGP President is the constitutional head of the College. Unlike the other Medical Royal Colleges, it is the Chair who sets the strategic direction and policy. The current RCGP Chair of Council is Professor Martin Marshall."


    Dr Andrew Goddard is current President of the Royal College of Physicians (RCP):
    https://www.rcplondon.ac.uk/about-rcp/whos-who/people/dr-andrew-goddard
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think O'Neill's logic maybe was to get a positive spin out before SMC pour treacle over everything.
     
    alktipping, Michelle, JemPD and 25 others like this.
  4. think_that_it_might

    think_that_it_might Senior Member (Voting Rights)

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    Is the article good then? I can't see the whole thing, but the 'angry backlash from the medical profession' bit seems a bit reductive.
     
    alktipping, FMMM1 and Peter Trewhitt like this.
  5. CRG

    CRG Senior Member (Voting Rights)

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    Questioning professional affiliation is a bit iffy. Every senior medical professional in the UK belongs to one of the Royal Colleges or some comparable entity, so calling out an 'august' body because it might back the view of one of its members doesn't have a lot of strength and certainly isn't going to make any friends amongst any of the Royal College memberships.

    At this point I'd be inclined to wait and see how NICE fights its own corner. If there is to be some kind of inter profession conflict it would be best to see who takes lumps out of who before doing anything that might encourage the profession to close ranks against the infidel*.

    *Us !
     
  6. Barry

    Barry Senior Member (Voting Rights)

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    upload_2021-8-17_13-15-59.png

    Like the patients who have been saying for many years how GET has seriously aversely impacted their health. It's no good arguing a therapy can maybe help some people, if you totally ignore by design those saying they have been harmed by it.
     
    Moosie, alktipping, Medfeb and 13 others like this.
  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Louie41, alktipping, EzzieD and 5 others like this.
  8. Ariel

    Ariel Senior Member (Voting Rights)

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    I agree. I realize it is different in the online version but perhaps another piece can run tomorrow (given that tomorrow is publication day) in the print edition that corrects this impression? It's really jarring and misleading, and quite a major publication so it does matter.
     
    Moosie, alktipping, EzzieD and 9 others like this.
  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    betwixt and between
    see:

     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It's the Colleges that matter (RSM is a club).

    The psychiatrists may well complain but their competing interest would be obvious. Those who have heard of Wessely, Sharpe and White will already know their links to PACE.

    The GPs might complain but in a way they are not 'experts' here. Iamnot sure giving any chairman or president the oxygen of publicity would help!

    The College that really matters is the Physicians. These are supposed to be experts and generally speaking (apart from Dr Crawley) have not got involved in therapist trials.

    I am a physician. Not many others seem to have given a view apart from Dr Speight (and Drs Weir and Nacul but they were on the committee). Dr Turner-Stokes as a rehabilitationist is also a physician and it will be interesting to see if she gets involved.
     
  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    There's a bit of me agrees with @Jonathan Edwards * if the medical profession do refuse to endorse this then it may simply highlight this fiasco [hope I'm not misinterpreting your statement Jonathan*]

    *https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-59#post-363624
     
  12. think_that_it_might

    think_that_it_might Senior Member (Voting Rights)

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    alktipping, Michelle, Nellie and 4 others like this.
  13. Ariel

    Ariel Senior Member (Voting Rights)

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    This was really the "news" I got out of this piece - perhaps this was a way of getting ahead of this and framing the issue appropriately on behalf of the writer who seems to understand the public relations shenanigans happening here?

    Or was this something that was either known about before, or overblown in the piece?
     
    ukxmrv, alktipping, Simbindi and 2 others like this.
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Not that I am aware of.
    I wonder if this is being hyped by someone along the chain?
    A huge amount of effort at NICE went into being politically correct and doing everything right for this guideline review. To say they were bamboozled would be pretty implausible.
     
    ukxmrv, alktipping, Michelle and 19 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I seem to remember MS saying a short while ago that several Royal Colleges were going to make their opposition known. Who might have spurred them on to do so...? I couldn't possibly speculate.
     
    alktipping, Joh, EzzieD and 7 others like this.
  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The following bodies:

    Royal College of Physicians
    Royal College of Psychiatrists
    Royal College of General Practitioner
    s

    published the dreadful Joint Royal Colleges' Report on CFS in 1996.

    https://shop.rcplondon.ac.uk/products/chronic-fatigue-syndrome?variant=6335269317

    "Please note: this report has been withdrawn and is not for clinical use.

    Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners"



    I don't have a PDF to hand on this laptop, but some pages can be read on Google Books.

    Edited to add: PDF version here:

    https://me-pedia.org/images/7/71/1996_UK_Chronic_Fatigue_Syndrome_report.pdf
     
    Last edited: Aug 17, 2021
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Some posts from the public page of ME Association on Facebook:

    https://www.facebook.com/meassociation

    (I have inserted para spacing for ease of reading.)


    ME Association
    Publication of a completely new NICE guideline on the diagnosis and management of ME/CFS on Wednesday this week is going to be a major event in the history of this illness.

    There is likely to be a lot of press interest (Times coverage already) and we will be providing extensive coverage on MEA social media all through the week.

    The ForwardME group has been preparing a comprehensive public statement and a press statement on the guideline to co-incide with publication of the guideline.

    I will be available on Wednesday and Thursday to take questions on the new guideline on MEA Facebook
    Dr CS MEA


    ME Association
    The Forward ME group of charities and individuals has prepared a comprehensive general statement on the new guideline and a press statement

    The press statement has been distributed today to all major news outlets and regional news outlets

    I am currently dealing with several enquiries from the national media as a result....
    Dr Charles Shepherd
    Hon Medical Adviser, MEA


    ME Association
    RE IMPLEMENTATION OF RECOMMENDATIONS IN THE NEW NICE GUIDELINE
    That’s a very good question!

    This is something that the MEA will be considering in great detail once we know the reaction of people with ME to the recommendations that are contained in the new guideline

    In very simple terms, NICE has also prepared comprehensive background information on various practical aspects relating to the implementation of the new guideline - including staffing and cost implications

    If we assume that the new recommendations are very similar to those in the November draft, then this will clearly involve significant changes to way in which existing hospital based referral services diagnose and manage people with ME/CFS

    I would hope that this process will involve meaningful consultation with people who already use these services and with the ME charity sector

    As far as timescale is concerned, I would hope that any significant changes in management protocols will start to occur fairly quickly
    And where there is a recommendation to stop using any form of treatment that is in the current guideline this will be acted on without delay

    One very important point is that these are guidelines - doctors are not forced to rigidly follow every NICE recommendation and can still use their clinical judgement

    But this obviously becomes very difficult if a doctor decides to use a treatment that is not recommended by NICE and a patient experiences harm as a result

    In this situation such action could be regarded as medical negligence
    Dr CS MEA
     
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  18. Ariel

    Ariel Senior Member (Voting Rights)

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    On the point about the Royal Colleges, what practical implications does it have if they speak up or don't speak up? What kinds of trouble could they cause to blunt any effect of the new guidelines?
     
    alktipping, mango, Sarah94 and 4 others like this.
  19. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Last edited by a moderator: Aug 17, 2021
  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Does the RCPG produce training materials for GPs or commission the production of training materials?
     
    Peter Trewhitt and Ariel like this.
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