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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. Trish

    Trish Moderator Staff Member

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    As part of the group I mentioned who wrote our submission, and a committee member, I certainly intend to spend as much time as I can in the next 2 weeks working on studying it in detail. As I said, we haven't clarified yet just how we will do this. We can't really tell how much detailed work will be needed until we read the final version.

    I spent so much time on it back in November/December I feel like I have the whole thing seared on my eyeballs! I think those of us who worked on it in line by line detail for our submission will be able to pick up fairly clearly where any changes are.

    I'm hoping any substantial changes might actually be highlighted by the guideline committee to help us with our response, but I have no idea whether that will happen.
     
    Trish, Aug 2, 2021
    #801
    Solstice, Invisible Woman, Mithriel and 25 others like this.
  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    If it is going to kick off over the next few weeks, just a reminder about the PEM reanalysis palava. That was not professional at all. They lied to stakeholders about the reason for the delay, and they've done extra work after the draft that may have changed the recommendations.
     
    InitialConditions, Aug 2, 2021
    #802
    Invisible Woman, Sarah94, Snow Leopard and 10 others like this.
  3. Trish

    Trish Moderator Staff Member

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    I personally think at this stage before we see the document, we should be guided by Dr Shepherd's wishes on this. He says he's not going to appeal.

    If the guideline turns out to be significantly changed for the worse, that would change things. I'd certainly want there to be strong protests.
     
    Trish, Aug 2, 2021
    #803
    Wits_End, Solstice, Invisible Woman and 14 others like this.
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Aug 2, 2021
    #804
    Invisible Woman, MEMarge, Barry and 6 others like this.
  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    FYI re NICE new Guideline release!
    'It would appear that some patients have been contacted by East Coast Community Health (ECCH). They are interested in the opinions of patients / carers in a review of the new NICE Guidance due later this month and any subsequent ME service redesign.
    Discussion to be via email and / or Teams /Zoom.
    If you are interested in contributing then you can ring the ECCH community access on 01493 809977. Or ECCH.enquiry@nhs.net. The deadline on the letter was 16th July, but still worth contacting them as they have not yet decided how they are going to proceed with the review.
    It would be very interesting to hear feedback from group members regarding this initiative from ECCH.'
     
    Suffolkres, Aug 2, 2021
    #805
    Invisible Woman, Barry, It's M.E. Linda and 4 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    I am disappointed that he isn't going to appeal; from the little I know, the decision seems very unfair.

    Dr Shepherd's decision about appealing may not also mean that he does not want organisations to protest the decision. But I can see that it could be a distraction at the time when we may need to be dealing with negative changes in the final guideline.
     
    Hutan, Aug 2, 2021
    #806
    Invisible Woman, Milo, Michelle and 7 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    At this point I'm thinking that the timing may make that irrelevant, such an appeal would be a slow process. Which may just have been the point. It probably hints at the politics hinted at by the BPS gang, with the medical associations applying pressure behind the scenes. We're probably just seeing a small glimpse of it, scattershots.
     
    rvallee, Aug 2, 2021
    #807
    Invisible Woman, Binkie4, Wyva and 6 others like this.
  8. Ariel

    Ariel Senior Member (Voting Rights)

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    Does anyone have any idea what is within the reasonable scope of possibilities for negative changes to the draft?

    On a personal note, as a person living with this illness, I often really cannot believe that people are spending their time trying to ensure harmful interventions are imposed on patients - with no warning attached and no regard for their welfare. It is still surreal after all these years that this happening.
     
    Ariel, Aug 2, 2021
    #808
    Wits_End, Solstice, Invisible Woman and 22 others like this.
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    Yup.
    The fat lady has not even started singing yet ...
     
    Amw66, Aug 2, 2021
    #809
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  10. chrisb

    chrisb Senior Member (Voting Rights)

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    I'm not sure I agree. Even if there were time for an appeal, the decision should be allowed to stand. When the final guidelines are published we will see the changes that have been made to the draft and we should also be able to see the representations which have led to those changes. Should it appear that inappropriate weight has been given to particular representations questions might arise as to the process. Corroborative evidence of inequity would be useful. If CS appears to have been treated differently to other members , or, at least, another member, that would appear to be prima facie evidence of bias, potentially.

    We should be ready to run with this.
     
    chrisb, Aug 3, 2021
    #810
    Wits_End, Invisible Woman, ukxmrv and 8 others like this.
  11. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    @chrisb I am sure that the ME Association is the stakeholder, not Dr CS as an individual, so he will get access to view the final (embargoed) version before 18 August.
     
    It's M.E. Linda, Aug 3, 2021
    #811
    Invisible Woman, alktipping, MEMarge and 6 others like this.
  12. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    To clarify, is 18th August the publication date?
     
    Sarah94, Aug 3, 2021
    #812
    MEMarge, Barry and Peter Trewhitt like this.
  13. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Dx Revision Watch, Aug 3, 2021
    #813
    Invisible Woman, alktipping, Michelle and 2 others like this.
  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    The NICE Project documents page says:

    Expected publication date: 18 August 2021
     
    Dx Revision Watch, Aug 3, 2021
    #814
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Dx Revision Watch, Aug 3, 2021
    #815
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  16. cassava7

    cassava7 Senior Member (Voting Rights)

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    According to the BMJ, four members of the committee have resigned in the past weeks.

    https://www.bmj.com/content/374/bmj.n1937

    I do not have access to the full article.

    ETA:
     
    Last edited: Aug 3, 2021
    cassava7, Aug 3, 2021
    #816
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  17. Marky

    Marky Senior Member (Voting Rights)

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    Thats concerning tbh
     
    Marky, Aug 3, 2021
    #817
    Barry, alktipping, Robert 1973 and 1 other person like this.
  18. cassava7

    cassava7 Senior Member (Voting Rights)

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    According to @Adam pwme, the following persons have resigned:

    Michael Beadsworth, consultant in infectious diseases in Liverpool
    Gabrielle Murphy, ex-BACME chair
    Joanne Bond-Kendall, senior physiotherapist in a ME/CFS service
    Charles Shepherd has been stood down.
     
    cassava7, Aug 3, 2021
    #818
    Barry, MSEsperanza, Milo and 10 others like this.
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Aug 3, 2021
    #819
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  20. Marky

    Marky Senior Member (Voting Rights)

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    I dont know these guys other than Shepherd, are they all against GET and CBT?
     
    Marky, Aug 3, 2021
    #820
    Invisible Woman, Barry, MSEsperanza and 2 others like this.
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