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UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Discussion in 'News from organisations' started by Andy, Jun 21, 2022.

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Page 7 of 20
  1. rvallee

    rvallee Senior Member (Voting Rights)

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    13,886
    Location:
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    Also, a note on the form delay. It's a credible explanation.

    It's not the same thing as, say, the Cochrane excuse and their system making it difficult to publish a bit of text.

    Online forms like this have data behind them. There is security, they have to be tested, the data has to produce reports, etc. These things happen, and IT is always handed the stuff at the last minute.
     
    rvallee, Aug 10, 2023
    #121
    Sean, Hutan, Peter Trewhitt and 2 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    5,967
    Dolphin, Aug 10, 2023
    #122
    Amw66, bobbler, Hutan and 3 others like this.
  3. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

    Messages:
    715
    It gets worse -

    Pulse GP: "Physical activities are good for ME and CFS. And working help their mental health"


    GPs do not go without vital healthcare because of ME patients. Their friendships and family relationships are not destroyed because of ME patients. Their lives are not downgraded to disposable because of ME sufferers. GPs have been misinformed, but that does not excuse those appallingly smug and contemptuous attitudes or the behaviors by doctors that ME patients have been subjected to. ME patients suffer at the hands of diverse doctors.
     
    Last edited: Aug 11, 2023
    Lou B Lou, Aug 10, 2023
    #123
    alktipping, Barry, EzzieD and 8 others like this.
  4. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

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    Haveyoutriedyoga, Aug 10, 2023
    #124
    alktipping, Lou B Lou, MEMarge and 4 others like this.
  5. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,906
    Location:
    Aotearoa New Zealand
    I feel a bit uneasy about a system where patients veto research that 'isn't liked' or certain sorts of studies are prohibited. I think a system that ranked research based on the likelihood of it producing valuable information would ensure that a CBT trial, and especially one with subjective outcomes, would end up near the bottom of the pile - it's a treatment that has been tried before, many times, and hasn't worked.

    I just want to challenge the idea that the grading system is flawed. I think probably any grading system can be flawed if the person using it doesn't know what they are doing or is biased. The GRADE system can work. A CBT trial that uses subjective outcomes is going to produce biased results, so the size of any outcome has to exceed that which can be obtained for a treatment that is both hyped and we know to have no actual effect. There would be some ways to estimate that. So, if there is no blinding, the result has to be outstanding, in order to be valid evidence of a clinically useful benefit. If, for example, 60% of the participants in a good sized trial reported being completely recovered at 1 year followup and the recovery rate in a suitable control was 5%, I think there is potentially some evidence there that should be considered.

    I think it's valid to not allow certain researchers who have done very poor work and/or have shown contempt for the patient group they would be working with to get further funding though. It's reasonable to require researchers to demonstrate meaningful engagement with the patient community in order to be funded. It's crucial to have expert patients on research funding panels.

    Edit - there are other issues too that might impact on whether a BPS treatment trial is funded - informed consent of the patients, likelihood of harm
     
    Last edited: Aug 10, 2023
    Hutan, Aug 10, 2023
    #125
    Ariel, rvallee, Amw66 and 4 others like this.
  6. JemPD

    JemPD Senior Member (Voting Rights)

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    4,513
    it depends what is meant by 'meaningful'... im pretty sure PACE had meaninfgul engagement with the community, or at least sections of it through AfME
     
    JemPD, Aug 10, 2023
    #126
    Ariel, MEMarge, Sean and 4 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    29,906
    Location:
    Aotearoa New Zealand
    Yep, and to a large extent, that's on the ME/CFS community. That is one thing people with ME/CFS can be accountable for - ensuring our patient charities are informed and representing our interests well. I don't underestimate how hard that is (we have ANZMES where I am, for example), but that is our job.
     
    Hutan, Aug 10, 2023
    #127
    Ariel, SNT Gatchaman, Sean and 2 others like this.
  8. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,446
    There is no way to estimate the size of nonspecific effects other than with a blinded and properly controlled trial.

    The size of nonspecific effects will depend on the specific contexts in a clinical trial. We know that some factors will increase nonspecific effects but we can't predict things precisely. If accurate predictions were possible we would not need blinded and properly controlled trials.
     
    Hoopoe, Aug 10, 2023
    #128
    Sean and Peter Trewhitt like this.
  9. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,906
    Location:
    Aotearoa New Zealand
    A reminder to consider using the consultation threads for relevant discussion. That way, useful points can inform submissions.

    Some posts have been moved to consultation threads.

    We have created some threads for members to discuss each section of the consultation and, if they wish, post copies of their submissions. These threads have links to the interim plan and to the consultation document, and copies of relevant content. We hope that these threads will help make it easy for UK members to draft their responses to the consultation (due by 4 October 2023).

    1. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Research
    2. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Attitudes and education of professionals
    3. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Living with ME/CFS
    4. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Agreed Actions
    5. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Language use

    We have a tag: UK Interim Delivery Plan to help you navigate between threads.
     
    Last edited: Aug 10, 2023
    Hutan, Aug 10, 2023
    #129
    alktipping, Ali, Ariel and 7 others like this.
  10. Hutan

    Hutan Moderator Staff Member

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    Location:
    Aotearoa New Zealand
    There's no way in the standard consultation process to make a comment on the Introduction content. I guess it could be shoehorned into comment on another section.

    I thought that the 'My full reality: the interim delivery plan on ME/CFS' was a strange title. What was the thinking behind 'my full reality'? Is my reality different to your reality? What is my reality full of? There's echoes of 'think differently, and you will be well', even though I am sure the phrase wasn't meant that way. I don't think there's any upside to that phrase.

    I'd be happier if the 'My full reality' was ditched.
     
    Hutan, Aug 10, 2023
    #130
    alktipping, Joan Crawford, Lou B Lou and 11 others like this.
  11. Sean

    Sean Moderator Staff Member

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    8,273
    Location:
    Australia
    Me too.

    Not saying it is not worth considering some form of it. Genuine and substantial patient involvement is an absolute must, and anything that has high levels of patient rejection is a non-starter. But veto is a serious power, and patients can be just as ignorant, foolish, biased, and stubborn as anybody else.
     
    Sean, Aug 11, 2023
    #131
    alktipping, Binkie4, Fainbrog and 7 others like this.
  12. Haveyoutriedyoga

    Haveyoutriedyoga Senior Member (Voting Rights) Staff Member

    Messages:
    913
    Location:
    South West, UK
    News of this publication/consultation just came out in this mornings The King's Fund general health policy alert email
     

    Attached Files:

    Haveyoutriedyoga, Aug 11, 2023
    #132
    Joan Crawford, Peter Trewhitt, Lou B Lou and 3 others like this.
  13. Midnattsol

    Midnattsol Moderator Staff Member

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    3,807
    An example of this would be Wyller's recent work, and how the Lightning Process study at NTNU is presented. "We're using the Canada Criteria, see we're doing like that patients are asking and still they complain!"
     
    Midnattsol, Aug 11, 2023
    #133
    EzzieD, Sean, Peter Trewhitt and 6 others like this.
  14. Adrian

    Adrian Administrator Staff Member

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    6,665
    Location:
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    Are they willfully failing to understand their methodological issues - or do they really not get what it takes to do meaningful research?
     
    Adrian, Aug 11, 2023
    #134
    EzzieD, Sean, Midnattsol and 9 others like this.
  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Jo @cfs_jo on Twitter has given permission for me to repost this email response to her series of questions:


    [​IMG]


    [​IMG]
     
    Dx Revision Watch, Aug 11, 2023
    #135
    Ash, Lou B Lou, Hutan and 6 others like this.
  16. Midnattsol

    Midnattsol Moderator Staff Member

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    3,807
    They are at least willfully avoiding to answer the critique they are getting, and using their authority as researchers to get away with not answering questions. As here, where Wyller is allowed to say their Lightning Process study uses "gold standard" methodology just because it is randomised and controlled, not replying to the problems the patient advocate Håland rises of lack of long term control (due to the stepped wedge design) and lack of objective measures:
    Have started a signature campaign to stop ME studies
     
    Midnattsol, Aug 11, 2023
    #136
    MEMarge, Sean, Hutan and 2 others like this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    They got nothing otherwise. It's that simple. None of their stuff passes scientific scrutiny. Not a single bit of it. They obviously understand that. They probably believe that eventually they'll figure it out in a way that does, but they can't back out of what they've done so they keep pushing using force instead of evidence.

    Pretending to do patient engagement kind of works, but they don't have a choice to misrepresent and distort, so it's the same in the end.
     
    rvallee, Aug 11, 2023
    #137
    alktipping, Ariel, Sean and 2 others like this.
  18. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    2,812
    If PACE had actually been carried out according to the original protocol then it would have (more) clearly demonstrated that the intervention didn't provide meaningful improvement.
    Lets says you (researcher) apply the following year (for funding) for basically the same study. I'll (reviewer) say "refused --- see outcome of previous study". Lets say the great and the good influence to get the study funded i.e. against my advice. FOI is submitted asking for the documentation re this funding award --. Opposition politicians get the soap boxes out and attack our Minister --- wasting public money.
    To summarise, I suggest that perhaps sound methodology isn't a threat ---


    As per @Brian Hughes I think you could prove any old crap with unblinded studies and subjective outcomes ---

    The system has some checks & balances --- see my comments above --- we need to "incentivise" our politicians i.e. to not fund crap research!
    Seems reasonable - one for charities, individuals to lobby politicians on!

    As per previous comment ---one for charities, individuals to lobby politicians on!
     
    FMMM1, Aug 12, 2023
    #138
    RedFox, rvallee, Peter Trewhitt and 2 others like this.
  19. Andy

    Andy Committee Member

    Messages:
    23,234
    Location:
    Hampshire, UK
    In case it is useful for anybody I emailed the consultation team to ask about what alternative formats are available and how to get them. Their response was

    "Alternative formats

    PDFs

    You can create a PDF of both the Interim Delivery Plan and the Consultation Summary.

    To do this, click “print this page” (on the left hand side of the webpage). Then set your printer selection to “Microsoft Print to PDF” or “Save to PDF”. This will save a PDF version to your own device.


    A PDF version of the consultation form will be available later today, via https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan

    You should only use this to send your responses if you are unable to use the online survey. We must receive your responses by 11:59pm on 4 October 2023. Responses received after this will not be taken into account. The postal address is given at the end of the document. This is not a Freepost address.


    Easy read

    An easy-read version will be available shortly, via https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan


    Audio

    An audio version of the Interim Delivery Plan is available from [Action for ME's dedicated Soundcloud page here].


    Hard Copies

    You can request a hard copy by emailing your name and address to mecfs@dhsc.gov.uk. Do not send any other personal information to this mailbox. Once your copy has been despatched, your contact details will be deleted."
     
    Andy, Aug 14, 2023
    #139
    alktipping, EzzieD, Hutan and 11 others like this.
  20. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
    708
    Does homo sapiens have a new cousin? Are people with ME about to get better treatment? And is three dates in one day too many? @OllyMann joins @holdenfrith, @leafarbuthnot and @harriet1marsden on The Week Unwrapped podcast.

    https://twitter.com/user/status/1689971280538107904
     
    Adam pwme, Aug 14, 2023
    #140
    Joan Crawford, Amw66, Hutan and 2 others like this.
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