UK House of Lords/ House of Commons Questions

Discussion in 'General ME/CFS news' started by Sly Saint, Nov 2, 2017.

  1. Andy

    Andy Committee Member

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    Chances are is that he has asked this question due to contact he has had with a constituent who either has, or cares for, someone with ME, so to me he seems to be up to his job of representing his constituents.
     
    Last edited by a moderator: Nov 1, 2022
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    [​IMG]Vicky Foxcroft Shadow Minister (Work and Pensions)
    To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 18 October 2022 to Question 59159 on Long Covid: Chronic Fatigue Syndrome, for what reason her Department decided not to collect this information.

    [​IMG]Neil O'Brien The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
    The long-term effects of COVID-19 and myalgic encephalomyelitis are separate conditions as defined by the National Institute for Health and Care Excellence.
     
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  3. CRG

    CRG Senior Member (Voting Rights)

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    The unspoken amplification of those replies is "ner na ner ner ner na" - One day we might have people in Government who see giving an answer to Parliament as an opportunity to inform and engage the electorate, as opposed to tediously snubbing the questioners. :bored:
     
  4. TiredSam

    TiredSam Committee Member

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    I've been following this thread for 29 pages and I still haven't seen anyone answer a question yet. It seems to be just a performance.
     
  5. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    Well, yes. But it’s sometimes fun trying to work out which gallery is being played to.
     
  6. Solstice

    Solstice Senior Member (Voting Rights)

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    Same in the Netherlands btw, nothing of note ever gets discussed regardless of party affiliation. Does my head in really, but it is what it is.
     
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)
    To ask the Secretary of State for Health and Social Care, what steps she is taking to raise awareness of myalgic encephalomyelitis amongst GPs and other doctors.

    [​IMG] Helen Whately Minister of State (Department of Health and Social Care)
    General Practitioners and other doctors are responsible for ensuring their clinical knowledge remains up-to-date as part of their continuing professional development.

    The National Institute for Health and Care Excellence (NICE) published an updated guideline on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in October 2021, to improve awareness and understanding about ME/CFS. This guideline includes recommendations on diagnosis and management. NICE promotes its guidance via its website, newsletters and other media.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah, so they're pretending that the medical associations did not announce that they rejected the guidelines and went ahead and did just that, have not budged on their pervasive refusal since. Despite everything Long Covid. Maximum chaos here and everything is fine and peachy and no one has to do anything.

    Reality basically doesn't matter. Doesn't matter that everything about this disease is wrong and decades of pseudoscience are a complete and miserable failure. Doesn't matter that the guidelines explicitly say the patients have been discriminated and that there are no treatments. It doesn't even matter that the guidelines are not just rejected but defied, with many continuing to do the same thing they were already doing explicitly in ways that show they know and just don't care, like doing GET-by-lying and calling it pacing, the opposite of what it's about.

    None of this actually matters. It's not relevant. Reality, real-life outcomes, I guess that's for sociologists, or something. If it doesn't happen in a clinic or hospital, as far as healthcare systems concerned it may as well not exist. Or even if it's seen in clinics, I guess, since LC is flooding healthcare with cases that are both noticed and also don't exist. This is beyond absurd.
     
    Last edited by a moderator: Nov 13, 2022
  9. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    Well yeah, but I have some sympathy with her point: GPs and other doctors really do not have an excuse for not being up to date with the NICE guidelines, which are unequivocal, how ever much clinicians with vested interests may pretend otherwise.
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    only learned this week that this is a well established political tool called 'the pivot';
    "If you have watched a debate, you have watched a pivot. "The pivot is a way of taking a question that might be on a specific subject, and moving to answer it on your own terms".
     
  11. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  13. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Baroness Scott of Needham Market
    eta:
    Hansard.........easier to read
    eta: Hansard

    https://hansard.parliament.uk/lords...105F485-3B07-4020-AA3A-118870DCF534/LongCovid
     
    Last edited: Nov 26, 2022
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    [​IMG]Tulip Siddiq Shadow Minister (Treasury)
    To ask the Secretary of State for Health and Social Care, how much his Department plans to spend on biomedical research into the (a) causes, (b) consequences and (c) treatment of Myalgic encephalomyelitis in 2022-23.

    [​IMG]Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
    The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011. In addition, the NIHR and the Medical Research Council have jointly funded a £3.2 million study into genetics and ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences which may indicate underlying causes or an increased risk of developing the condition.
     
  17. CRG

    CRG Senior Member (Voting Rights)

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    "The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011."

    Slippery answer. Biomedical I think not:

    CS/08/08/06
    Evidence based prevention, identification and treatment of chronic fatigue syndrome (CFS/ME) in children and young people
    University of Bristol
    Professor Esther Crawley
    £816,199.28
    28/02/2014

    PB-PG-0609-19108
    Chronic Fatigue Syndrome (CFS/ME) interventions within the Primary Care Setting: Developing resources for support and self-management in primary care.
    NHS Central Manchester CCG
    Dr Lisa Riste
    £234,129.00
    28/02/2014

    DRF-2011-04-061
    Mediators, Moderators, Mixtures and Model Averaging
    King's College London
    Ms Kimberley Goldsmith
    £287,517.06
    2011

    PB-PG-0610-22060
    Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome: a randomised controlled trial in secondary care
    Barts Health NHS Trust
    Professor Peter White
    £343,008.00
    01/04/2016

    PB-PG-1010-23253
    Early Intervention In Fatigue: A Feasibility Study
    North Bristol NHS Trust
    Dr Hazel O'Dowd
    £214,613.00
    01/08/2014

    PDF-2013-06-011
    CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services
    University of Bristol
    Dr Simon Collin
    £320,885.66
    31/12/2016

    SRF-2013-06-013
    Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME).
    University of Bristol
    Professor Esther Crawley
    £840,691.00
    28/02/2019

    RP-DG-1213-10001
    Fatigue: acute fatigue Assessment and Management in Everyday practice (FAME)
    Southern Health NHS Foundation Trust
    Professor Paul Little
    £99,962.00
    01/06/2018

    14/192/109
    Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK
    University of Bristol
    Professor Esther Crawley
    £1,026,403.00
    01/05/2022

    ICA-CL-2015-01-019
    Developing an activity pacing framework for the management of chronic pain/fatigue
    Pennine Acute Hospitals NHS Trust
    Dr Deborah Antcliff
    £108,331.00
    31/01/2020

    DRF-2016-09-021
    Depression in paediatric chronic fatigue syndrome (CFS/ME)
    University of Bristol
    Dr Maria Loades
    £317,866.00
    28/02/2022

    DRF-2017-10-169
    Developing an effective intervention for younger children (5-11 years) with Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME)
    University of Bristol
    Miss Amberly Brigden
    £222,971.00
    01/04/2021

    NIHR200509
    Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice.
    Royal United Hospitals Bath NHS Foundation Trust
    Professor Esther Crawley
    £149,457.00
    02/09/2022

    Which I make as a not approximated: Total = £4,982,033 going to non biomedical research since and including 2011, or £4,694,515.94 excluding the 2011 award.


    Numbers originally post at https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406653 and https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406657

    Anyone in contact with Tulip Siddiq ?
     
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  18. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    It would be good if other people contacted her also.
     
  19. RedFox

    RedFox Senior Member (Voting Rights)

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    That's...depressing. They haven't funded anything biomedical except DecodeME?
     
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    How can they list those studies and claim they are "biomedical" with a straight face? This is clearly false and it takes all of 2 minutes to see it.

    Oh, right, no accountability and no one involved at this level cares.
     
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