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Australia: National Health and Medical Research Council (NHMRC): Development of ME/CFS guidelines

Discussion in 'Other reviews with a public consultation process' started by Dolphin, Jun 20, 2024.

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  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    The NHMRC has contacted the College advising that they will be establishing a Guideline Development Group and have requested that the College nominate members with expertise in:


    This sounds pretty bad I am afraid.
    The guideline will presumably be written by the people with the greatest vested interest in protecting old ways. The chairmanship will likely go to a rehabilitationist.

    I may be over-cynical but that would be par for the course.
    It would need a good representation of patients to have a chance of being sensible.
     
    Jonathan Edwards, Dec 6, 2024
    #21
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    My assumption as well, but that's only because it happens like this every single time. :(
     
    rvallee, Dec 6, 2024
    #22
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  3. Hutan

    Hutan Moderator Staff Member

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    Well, not every time. NICE is an example where it didn't, and there are quite a few others too where the views of patients and people without a prior bias to the rehabilitation approach was heard and did have an impact. But yes, it is not sounding good here.
     
    Hutan, Dec 6, 2024
    #23
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  4. Sean

    Sean Moderator Staff Member

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    The lesson the old boys club in medicine around the world has learned from the NICE experience is to make sure that no informed competent independent people, especially patients, will be allowed any significant input or influence on the guidelines.

    I am not the slightest bit surprised. Australia has long been home to some of the most rabid members of the psychosomatic club, who have very successfully hijacked the debate and formed the medical establishment's views on this matter here, and apparently are going to be allowed to go right on doing it.

    Oh, they will go through motions, and pretend to listen. But then do whatever they want anyway.

    I fully expect to be shafted again by them.
     
    Sean, Dec 7, 2024
    #24
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  5. Hutan

    Hutan Moderator Staff Member

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    Yes, and it's not just the psychosomatic paradigm proponents we have to worry about. I think pretty much any doctor in Australia with a profile in 'the management of ME/CFS' holds a range of unevidenced ideas, and prescribes accordingly.

    So, we may see supplements, acupuncture, long courses of antibiotics, anti-depressants and more being pushed as useful treatments in the guideline process.
     
    Hutan, Dec 7, 2024
    #25
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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm counting the tantrums and systemic refusal to implement any of it as part of the process itself. It set off to a bad start, stacked with ideologues, still managed to produce something reflecting reality that would have significantly improved outcomes, and still failed because it was rejected entirely.

    Doesn't matter much if something mildly good is produced if it's arbitrarily rejected by the health care system and nothing changes.

    Otherwise it's like leading a race most of the time, then crashing before you reach the finish line. That's a loss even if you lead for 99% of the race.
     
    rvallee, Dec 7, 2024
    #26
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  7. Hutan

    Hutan Moderator Staff Member

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    I have been trying hard for about two years to get on the panel that will be doing the work. There doesn't seem to be a way in, it doesn't look as if there will be any merit based assessment of candidates. It's so frustrating to only be allowed to snipe ineffectually from the sidelines. I'm at a loss to know what more to do.
     
    Hutan, Dec 7, 2024
    #27
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  8. Sean

    Sean Moderator Staff Member

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    Seems clear that we are still stuck in the getting basic facts and critiques on the formal public record so nobody can deny they were not raised stage.

    Given both the history and current situation in mainstream medicine in Australia on ME/CFS I am not in the slightest bit surprised about the latest news. But it is deeply depressing that we look like having to go through another round of this toxic fraudulent shit.

    Hell hath no fury and denial like the medical establishment being exposed and denied.
     
    Last edited: Dec 8, 2024
    Sean, Dec 8, 2024
    #28
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  9. Hutan

    Hutan Moderator Staff Member

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    Here's the website for the process.
    https://www.nhmrc.gov.au/health-advice/me-cfs

    And the timeline
    Planning and Governance - September 2024 to March 2025 6 months
    Scoping and consultation - January to June 2025 6 months
    Evidence review - June 2025 to June 2026 12 months
    Development of recommendations - June 2026 to February-June 2027 8 to 12 months
    Draft guideline - June to December 2027 6 months
    Publication consultation / NHMRC release - August to December 2027 6 months
    Dissemination / Implementation - March 2028 8 months
     
    Hutan, Dec 10, 2024
    #29
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm not familiar with how these processes usually go, but this seems excessively slow. It could be that this is standard bureaucratic inefficiency, but even by those standards 4 years is extreme. Like taking 30 years to build a single kilometer of road extreme.

    Are those systems really just that bad all-around? Or is this just the special exemption we get when those systems have no intention of doing any of this and are just slow-walking it as long as possible to give it the possibility of being cancelled out by letting enough time pass?

    I frankly can't conceive of such a process even taking one year without having arbitrary months-long "just waiting around" periods. Like it reflects how health care work: 99-99.9% just waiting around for someone, without about 1-2 hours maximum of work done during a waiting around period of 6 months.
     
    rvallee, Dec 10, 2024
    #30
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  11. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    So they're assuming nothing will change in the evidence base between now and 2028
     
    Snow Leopard, Dec 14, 2024
    #31
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  12. Sean

    Sean Moderator Staff Member

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    Or that it gives the psycho-behavioural crowd more time to flood the literature with their usual repetitious methodologically inferior nonsense to pump the numbers, knowing full well how much ground has still to be made up for the biomedical stuff to get a fair run.

    Also looks like the core of it is going to be cemented in place before the public gets a say.
     
    Sean, Dec 15, 2024
    #32
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