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House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

Discussion in '2020 UK NICE ME/CFS Guideline' started by Sly Saint, Sep 15, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Joel, Cheshire, Barry and 20 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    So what do we think this means? Baroness Thornton is a labour shadow minister who was previously Parliamentary under-secretary for Health? Who answers for the government in the Lords on Health questions? Is it Lord Bethell? Best known for his telephonic difficulties.
     
    MEMarge, Barry, Louie41 and 7 others like this.
  3. Arvo

    Arvo Senior Member (Voting Rights)

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    This looks like it will happen today right?

    Is this good? My uneducated guess says it seems so.
     
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    The thread title suggests the 12th of October 2021, which is not today yet.

    As to good, who knows, I don't.
     
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    No. Tuesday, 12th October is the date. Nothing happens quickly. Well, not much.
     
  6. Arvo

    Arvo Senior Member (Voting Rights)

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    Lol, thanks! A clear sign I need to take a rest and put my feet up, I knèw it was next month the first time I saw it, and then somehow after the next views I thought it was today. (I even checked it before my post.)

    Well, I don't have to explain to you how that happened...:rolleyes:
     
  7. chrisb

    chrisb Senior Member (Voting Rights)

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    The timing could be quite useful. Isn't the roundtable going to take place during the following week. This should give time for the DoH to establish their position, but close enough to the event to prevent any substantial variation, without very good reason.
     
  8. It's M.E. Linda

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

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  9. Barry

    Barry Senior Member (Voting Rights)

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    Should this be brought to Carol Monaghan's attention? Though I imagine she is likely already aware of it anyway.
     
  10. It's M.E. Linda

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

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    I expect she is aware @Barry . Baroness Ros Scott of Needham Market is a member of Forward-ME and would be keeping her colleagues updated on any work going on in the House of Lords.

    https://me-pedia.org/wiki/Baroness_Scott_of_Needham_Market
     
    Channa, Barry, MEMarge and 3 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    ladycatlover, Arvo, Channa and 5 others like this.
  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Just starting at 2:36pm

    • Oral questions: The credibility and integrity of the assessment processes in schools for this summer’s A levels and GCSE examinations

      Lord Hunt of Kings Heath (Labour)

    • Oral questions: Government discussions with the National Institute for Health and Care Excellence about myalgic encephalomyelitis and chronic fatigue syndrome

      Baroness Thornton (Labour)
     
  13. chrisb

    chrisb Senior Member (Voting Rights)

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    How "independent" do we think NICE is? Lord Kamall keeps saying "We".
     
    Joel and Peter Trewhitt like this.
  14. Trish

    Trish Moderator Staff Member

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    I heard a bit of it. The reason given for the delay was something like: that all sides have to be heard and that there is concern from some (unspecified) about the removal of GET which some patients find unhelpful and some find helpful in managing their condition. Or some such rubbish.

    I assume there will be a transcript.
     
    Joel, Anna H, rainy and 10 others like this.
  15. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    There should be a transcript on Hansard tomorrow, assuming it's the same as for the House of Commons.
     
  16. Tao Fogger

    Tao Fogger Established Member (Voting Rights)

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    They did at least admit that the delay was caused by the protestations of clinicians about removing GET. IF only they could get their heads round the risks of it if (as is the case) they can't work out in advance of treatment who it helps and who it harms.
     
    Joel, JoanneS, cfsandmore and 7 others like this.
  17. Arvo

    Arvo Senior Member (Voting Rights)

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    Indeed in typical false balance way he kept hammering on how important "consensus" was like it was a matter of differing opinions instead of analysis of the evidence, science and real-life effect on patients vs. the vested financial and professional interests and unfounded ideology of people delivering GET who don't like that guideline changed. And that NICE wanted to use the roundtable to hear "a wide range of views" like they didn't do exacly that for the last 3-4 years. (and he called patients being "frustrated" because the guidelines were delayed, FFS man, I lived in hell and nearly died because of this crap, as have countless of others)*

    But he says he wants to be written to if NICE delays further as he wants to be pushed about it, and he wants to be pushed "to make sure we are addressing the genuine needs of patients and that patients are not ignored", so there's that.



    ps: He was asked if there was a connection with the treatment being opportune for LongCovid. I would have to look back, but I can't recall that he answered that particular question.


    Edited to add *He is new, as he said about 20 times. And he only has the info he has. So maybe it's not that surprising that he just repeats the same superficial arguments that were already made instead of genuinly answer the questions, because that's all he read up about. But I detest political answers and non-answering of unwanted questions, which he did. I'm just so done with people suffering because people who can make a difference don't do their homework. If that is fair on him I don't now, I am going to make a cup of tea to de-grrr.
     
    Last edited: Oct 12, 2021
    Hutan, Joel, Anna H and 12 others like this.
  18. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I was under the impression that Evidence Based Medicine was introduced in the 90s to get rid of "medicine by consensus" because consensus very often ignored scientific evidence, and just took the opinions of the "leaders" in any field - which is to say the old male doctors who controlled the profession.
     
    Hutan, Daisy, Joel and 10 others like this.
  19. Wonko

    Wonko Senior Member (Voting Rights)

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    I am not of the opinion that he answered any questions on this subject - all he did was keep reading out the blurb that's been public domain for quite a while now.

    So, no attempt, at all, to actually answer anything (given he must know that the people asking had probably already read all of the blurb).
     
    rainy, JoanneS, ladycatlover and 2 others like this.
  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    https://hansard.parliament.uk/lords/2021-10-12

    Lords Hansard for 12 October 2021
    The House is due to sit on Tuesday 12 October 2021 but no content is available at this time. An uncorrected, "rolling" feed will be updated here throughout the day starting approximately 3 hours after the sitting commences. This will be replaced with a corrected, searchable version by 6am the next working day. Content is available for Monday 11 October 2021.
     

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