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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 5 of 17
  1. JemPD

    JemPD Senior Member (Voting Rights)

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    4,500
    well amen to that!
     
    JemPD, Aug 10, 2023
    #81
    adambeyoncelowe, alktipping, Ariel and 9 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    https://www.gov.uk/government/consu...erim-delivery-plan-on-mecfs#executive-summary
    Edit - I thought that meant, for all nations of the UK, but it doesn't seem to:
    That makes it sound as though the interim delivery plan is the baseline - 'going further' doesn't sound anything like 'returning to the pre-NICE guideline status quo'. :)

    Maybe we have indeed turned a corner, maybe things will be different.

    As a person who doesn't live in England, I note that the NICE Guidelines have made a big difference in advocacy, and having a good Delivery Plan to point to will be enormously helpful also.
     
    Last edited: Aug 10, 2023
    Hutan, Aug 10, 2023
    #82
    adambeyoncelowe, alktipping, EzzieD and 20 others like this.
  3. Sean

    Sean Moderator Staff Member

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    Location:
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    The government ultimately controls the purse strings. They can starve the BPS cult into submission, or at least irrelevance, if required.

    Similar with legislation. If the government can ban bad medical practices like conversion therapy for homosexuals, they can ban it in this area too, if required.

    That is the impression I get from this document (what I have read of it so far). It is a major change of position, which is not something that governments, especially in democracies, tend to do casually.

    That said, I will of course be withholding final judgement until I see the practical policy and funding responses. But all indications from this document are that there has been a fundamental government level change in the UK.

    Speaking more parochially, it is going to have a major influence on what happens here in Anglophile Australia too (and no doubt other countries).

    There have, quite rightly, been complaints about the lack of progress on our new guidelines, including concerns about how they will be produced, and who is going to write them. But it is likely the case that our medical authorities have been (in large part) waiting on the outcome of the NICE process and associated subsequent changes at the government and policy level, before committing firmly to any new position.

    It may not be an ideal approach, but it is not an indefensible one either. Apart from any other reason, we are a small country (27 million people), and resources are limited. Makes a certain sense to let others with more resources (especially the UK & USA) do most of the initial heavy lifting, and then use that work to inform our actions, rather than duplicating the entire process here.

    This. The hard core of the BPS gang have it made it crystal clear they are going down with the ship, and are fighting as hard and dirty as ever. They will still need to be actively monitored and opposed (where required). I don't see this changing in the short-med term, though their influence is now clearly greatly reduced and on the decline.
     
    Sean, Aug 10, 2023
    #83
    adambeyoncelowe, EzzieD, Ariel and 14 others like this.
  4. Science For ME

    Science For ME Forum Announcements

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    1,189
    No decision about a Science for ME submission to the consultation has been made yet.

    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
    Science For ME, Aug 10, 2023
    #84
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  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Would it be useful to ask researchers to include a group of ME patients in their studies of other illnesses when these studies are potentially relevant to ME?

    A ME comparison group could be added to for example a study of neuromuscular function in patients with myasthenis gravis. This expands knowledge of ME and how it compares to another illness, get research done by someone with experience, and maybe the researchers see something they find interesting to look at in a subsequent study.
     
    Hoopoe, Aug 10, 2023
    #85
    adambeyoncelowe, Ariel, ukxmrv and 8 others like this.
  6. Arvo

    Arvo Senior Member (Voting Rights)

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    I've read all your posts with interest.

    I'm so happy for you this is happening.:)
     
    Arvo, Aug 10, 2023
    #86
    adambeyoncelowe, EzzieD, Fizzlou and 9 others like this.
  7. Annie

    Annie Established Member (Voting Rights)

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    Audio version of the delivery plan:

     
    Annie, Aug 10, 2023
    #87
    adambeyoncelowe, Lidia Thompson, Michelle and 14 others like this.
  8. Andy

    Andy Committee Member

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    Hampshire, UK
    Andy, Aug 10, 2023
    #88
    adambeyoncelowe, Ali, Annie and 13 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    Location:
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    And 241,000? Is the method of estimation really so accurate that it warrants the precision of that extra 1000?
     
    Hutan, Aug 10, 2023
    #89
    adambeyoncelowe, alktipping, Ali and 11 others like this.
  10. Kitty

    Kitty Senior Member (Voting Rights)

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    Norwich has been trying to establish a centre of excellence for some time, and it does seem as if we need a couple of these to shift the centre of gravity away from institutions where the BPS school has held sway. They'd need multi-year core grants, so they have the staff resources to go after project funding, establish doctoral programmes, and so on.
     
    Kitty, Aug 10, 2023
    #90
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  11. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    I think the key thing here is to systemically target Government funding bodies --- all of the UK BPS research is funded by the Government:
    • directly i.e. via "arms length" bodies which are created (by the Government) to allocate public research funding such as ----UKRI (?);
    • indirectly i.e. via bodies which themselves are publicly funded such as universities.
    OK I've contacted individuals in Government, APPGs, --- pointing out that NICE found all of the publicly funded research was "low or very low quality". Typically studies lacked objective outcome criteria; this was highlighted by the authors [Jonathan & others] of the letter to BMJ*&**.

    *https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses
    ** - thread - https://www.s4me.info/threads/anoma...me-2023-white-et-al.34097/page-27#post-488173

    Interesting - I'd be interested in details.
     
    FMMM1, Aug 10, 2023
    #91
    adambeyoncelowe, alktipping, EzzieD and 6 others like this.
  12. Adrian

    Adrian Administrator Staff Member

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    6,563
    Location:
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    They have been and I think there needs to be several centres (but a center doesn't need to be in one place). I think we need to look at how we create communities around differing potential approaches that can pull in more people.
     
    Adrian, Aug 10, 2023
    #92
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  13. Adrian

    Adrian Administrator Staff Member

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    6,563
    Location:
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    I think somewhere I remember a figure of 280,000 being quoted for the UK. I assume based on the 250,000 estimate upped for population change. I wondered if this figure of 241k was based on this but adjusted in proportion according to the English population
     
    Adrian, Aug 10, 2023
    #93
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  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yea a high profile policy like the UK NICE Guideline creates difficulties for those who wish to stick with the BPS approach.
    I think the German proposals* were significantly altered --- the UK NICE Guideline would, I assume, have helped.

    https://www.s4me.info/threads/germa...ment-on-me-cfs-report-out-now-may-2023.21266/
     
    FMMM1, Aug 10, 2023
    #94
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  15. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    Yea echoes a comment from a family member --- bear in mind that to pass exams, get a job etc. you had to reiterate these "truths"; look at the great & the good (still) defending their crap research. I wouldn't blame the practitioners, nurses etc., but I wouldn't be opposed to patients complaining to the NHS re treatment which breaches the guideline.
     
    FMMM1, Aug 10, 2023
    #95
    adambeyoncelowe, bobbler, Ariel and 1 other person like this.
  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    At the moment I'm feeling quite overwhelmed by the magnitude of the task of responding to the plan. I realise this isn't helpful when at last someone is listening but I am concerned over how many of us are in this position.

    I have been active in the past in contacting various bodies as has Mr B, but at this moment, I don't feel for various reasons ( a particularly bad bout of PEM and other health conditions to manage, advancing age) we have the resources to do it. It would be hugely disappointing if there are relatively few responses and could be taken as a signifier of lack of patient interest.

    I hope I am being unnecessarily gloomy, that there are sufficient people able to step up and respond with sufficient time and vigour now that someone is finally listening?
     
    Binkie4, Aug 10, 2023
    #96
    adambeyoncelowe, alktipping, EzzieD and 18 others like this.
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Merged thread

    News story: Government announces new plan to help those impacted by ME/CFS

    Interim delivery plan outlines 21 actions to improve understanding, research and care for those living with myalgic encephalomyelitis/chronic fatigue syndrome
    https://www.gov.uk/government/news/government-announces-new-plan-to-help-those-impacted-by-mecfs
     
    Last edited by a moderator: Aug 10, 2023
    Sly Saint, Aug 10, 2023
    #97
    adambeyoncelowe, alktipping, Barry and 5 others like this.
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    GPs to be given training on ME/CFS to counter ‘dismissive attitudes’
    https://www.pulsetoday.co.uk/news/c...ng-on-me-cfs-to-counter-dismissive-attitudes/
     
    Last edited: Aug 10, 2023
    Sly Saint, Aug 10, 2023
    #98
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  19. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    1,053
    Location:
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    The comment below the line from David Church is fair, to some extent:

    A module which explains that the LP is bollocks would be quite handy.
     
    Shadrach Loom, Aug 10, 2023
    #99
    adambeyoncelowe, EzzieD, Ali and 8 others like this.
  20. Lou B Lou

    Lou B Lou Senior Member (Voting Rights)

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    673



    Pulse Commenters (GPs) out already. Making it clear that criticizing government proposals that they have not read is preferable to actually reading the Interim Report. One thinks GPs don't need training but ME patients do need to be trained to not ask for referrals to non existent specialists. Must say Pulse Commenters (all GPs) do discourage me from ever trying to discuss ME with my GPs. The dismissal of the disease/ME patients that's noted in the Interim Report is always apparent in those Comments.
     
    Lou B Lou, Aug 10, 2023
    #100
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