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Science for ME submission to the NICE draft ME/CFS guideline consultation, December 2020, and submission on substantive errors, August 2021

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Dec 15, 2020.

  1. SallyC

    SallyC Senior Member (Voting Rights)

    Messages:
    216
    Thank you to everyone who has worked so hard on this. It is an incredibly impressive submission and I am very grateful to S4ME for achieving something which I am currently unable to do.
     
    alktipping, Frankie, oldtimer and 9 others like this.
  2. Nightsong

    Nightsong Senior Member (Voting Rights)

    Messages:
    153
    That's a brilliant piece of work. Detailed, thorough, forensic, very impressive.

    Very pleased to see such a comprehensive dissection of the language in the draft (e.g. fixed vs. flexible increases), the wording of which might have allowed for GET-lite and psychotherapies to continue under the guise of "supportive" management. The comments on sensory sensitivities are so clearly borne out of the deep experience that only a severe pwME can have.

    Hope they pick up on the service/commissioning recommendations. It may be a little beyond NICE's remit, but there's also a serious historical injustice to put right.

    If even some of the recommendations on severe and very severe ME are adopted and put into clinical practice, the results will be life-changing for so many, especially those who've been abandoned to their beds for years on end.
     
    alktipping, Frankie, Alis and 12 others like this.
  3. Marky

    Marky Senior Member (Voting Rights)

    Messages:
    588
    Location:
    Norway
    What an amazing job u have done. From the bottom of my heart - bravo!
     
    alktipping, Frankie, Joh and 9 others like this.
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Huge sincere thanks to the team for putting this together. Superb.
     
    alktipping, Frankie, Joh and 10 others like this.
  5. Andy

    Andy Committee Member

    Messages:
    21,896
    Location:
    Hampshire, UK
    @Adrian will be the one who can tell us that, but as far as I know, not yet.
     
  6. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    No they haven't replied. I've checked with someone else who submitted and they also haven't had a reply. I will email again tommorrow morning to check. Given the timing it wouldn't surprise me if they are all on holiday.
     
    alktipping, Sarah94, Kitty and 5 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    OK, sorry for being pedantic. It's just that in the past I've been caught out occasionally. Hopefully they will provide an acknowledgement before the Christmas closure. Many thanks.
     
    alktipping, ukxmrv, Kitty and 3 others like this.
  8. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    I did copy the submission to my (work) email so I know it got sent and received at least by my email.
     
    alktipping, Sean, ukxmrv and 7 others like this.
  9. Andy

    Andy Committee Member

    Messages:
    21,896
    Location:
    Hampshire, UK
    Sorry, meant to confirm with you, I received it at my s4me address.
     
    alktipping, ukxmrv, MEMarge and 7 others like this.
  10. Adrian

    Adrian Administrator Staff Member

    Messages:
    6,486
    Location:
    UK
    We now have an acknowledgement


     
  11. Daisybell

    Daisybell Senior Member (Voting Rights)

    Messages:
    2,631
    Location:
    New Zealand
    This is a brilliant piece of work. My heartfelt gratitude to everyone who worked so hard - and I hope that your health has not been affected.
     
  12. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,385
    Excellent! :)
     
    alktipping, ukxmrv, oldtimer and 2 others like this.
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,660
    Have now finished reading through all our final recommendations/comments in relation to the NICE draft guidelines. I repeat how I am impressed by and grateful to those that have put so much work into collating and editing our response.

    It is clear that, though the NICE draft represent a massive step forward, there are still important changes in understanding required: the placing of specialist services within a consultant/GP/specialist nurse framework, removing the back doors for activity programmes aimed at increasing activity and the removal of CBT programmes recommended specifically for ME/CFS (back door psychologising). Hopefully at least where the NICE draft contains internal contradictions our recommendations will be taken on board. It is also promising that of the different patient group/charity submissions I have looked over there is substantial overlap with our recommendations.

    The recent BMJ editorial about the NICE draft guidelines suggests that there will be significant BPS kick back against that draft and in the opposite direction to the developments we would like to see. So there is still a way to go before we can be confident that the new NICE guidelines will be all we hope, though if the quality of submissions supporting the status quo are comparable to the published editorial hopefully the weaknesses in their arguments and their internal contradictions will be evident within NICE’s collation of stakeholder and individual contributions.

    Beyond this, if we get new guidelines that we can substantially support, to implement those guidelines we will need a major philosophical shift across all services, which will be the work of decades, though perhaps we can be more optimistic that change is starting to go in the right direct.

    On a personal level, reading through our submission has brought home how my understanding of ME has developed over the nearly thirty years I have had the condition. Hopefully people now developing ME will be able to access a clearer understanding right from the start and be better able to manage their condition and their lives with ME than I was all those years ago.
     
    Rosa, Amw66, alktipping and 21 others like this.
  14. Andy

    Andy Committee Member

    Messages:
    21,896
    Location:
    Hampshire, UK
    I think only Google can answer why they are presenting that search result to you in that way.
     
  15. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Messages:
    3,601
    Location:
    UK
    Well done you guys & thank you so much
     
    alktipping, Frankie, MEMarge and 6 others like this.
  16. lunarainbows

    lunarainbows Senior Member (Voting Rights)

    Messages:
    2,820
    I haven’t yet been able to read it all but thank you so much for this and for representing our views. Just scrolling through and it’s clear there’s so much work that’s gone into it. I’m so glad we have this community and other ME communities who are having a lot of input. :)
     
    alktipping, Nellie, Sarah94 and 9 others like this.
  17. Alis

    Alis Senior Member (Voting Rights)

    Messages:
    138
    And big thank you to you Luna for all your input on severe/very severe me.
     
    alktipping, Barry, Sarah94 and 12 others like this.
  18. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
    626
    Thank you to all involved for such an excellent and comprehensive response. Much appreciated.
     
    MEMarge, alktipping, Nellie and 4 others like this.
  19. It's M.E. Linda

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

    Messages:
    918
    My very sincere thanks to the whole team who were able to produce such a detailed response to NICE.:emoji_clap::emoji_clap::emoji_clap:
     
    MEMarge, alktipping, Barry and 3 others like this.
  20. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Messages:
    854
    Thank you. Fantastic job!
     
    MEMarge, alktipping, Kitty and 3 others like this.

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