Australia: 2022 Parliamentary inquiry into Long Covid and repeated covid infections - report issued April 2023

Discussion in 'Advocacy Projects and Campaigns' started by Hutan, Sep 30, 2022.

  1. Hutan

    Hutan Moderator Staff Member

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    From an email from the Australia Parliament:

    Report published: Inquiry into long COVID and repeated COVID infections

    The House of Representatives Standing Committee on Health, Aged Care and Sport has today published the report for its inquiry into long COVID and repeated COVID infections, entitled Sick and tired: Casting a long shadow.

    The report and a media release announcing its publication are available on the Australian Parliament House website using the below links:
    The Committee’s inquiry has now been completed. The Committee expects that a Government response to the report will be presented in due course (exact timing is a matter for the Government). When available, the Government response will be accessible via the Committee’s web page.
     
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  2. Hutan

    Hutan Moderator Staff Member

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  3. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    A news article summarising the recommendations:

    Edit:

    Recommendation 8 of the report is for ME/CFS:

    (The NHMRC report is discussed on the fourm here. )
     
    Last edited: Apr 24, 2023
  4. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    Unfortunately, as I feared, those of us with ME/CFS in Australia have been let down very badly by this Inquiry.

    I haven't had a chance to read the report yet, but ME/CFS is apparently mentioned in the Chair's Foreword and there is an addendum dedicated to ME/CFS. This is from social media:

    The foreword:

    The addendum:

     
    Last edited: Apr 24, 2023
  5. Sean

    Sean Moderator Staff Member

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    Yes, that is not great. But even there they are leaving wiggle room:

    Clinical evidence about a possible overlap between ME/CFS and long COVID is not yet clear.

    So get to researching it properly then.
     
    Last edited: Apr 24, 2023
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Long COVID education should be part of CPD: Report
    The Government has committed to a national plan and more funds, while the RACGP’s Professor Mark Morgan says more immediate help is needed.
    https://www1.racgp.org.au/newsgp/clinical/long-covid-education-should-be-part-of-cpd-report
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Not sure if in the same document, but I think I saw comments from a medical association saying that ME should be excluded from this because they're not sure yet whether there is an actual overlap. Of course this being the way to be sure doesn't factor in the circular reasoning. Still motivated mainly by avoiding the embarrassment of proving we were right all along.

    So the big question is how much they will listen to the people who failed, vs the people reporting the massive systemic failure and who clearly understand the issue far better. Because it couldn't be more clear that there is a total dispute over the basic facts here, and only one side will be happy with the outcome, they are mutually exclusive. Well, temporarily anyway, since the happiness over failing here will inevitably be shamed by an eventual breakthrough. Pyrrhic victory of sort, but we're the ones tied to the fire, they won't ever feel the heat.

    I still don't understand the parochial nature of all those efforts. There are no significant differences between countries, and the best way to know about those would be an international collaborative effort. But instead it's every country for itself, even every local healthcare system for themselves, with zero cooperation, zero sharing of resources, no economies of scale, no overarching strategy. As effective as a search & rescue operation without any coordination, just people randomly walking in circles, with most having long gave up and went to the pub.

    As long as it remains this way, I'm not sure we'll see much, since all we're seeing is basically everyone repeating the same failure in parallel, without ever connecting a single dot about it.

    Because proportionally, this is close to the NIH's $1.15B. If you add it all up it makes for a huge budget that could remove most of the waste and needless duplication. This is the scale that's needed here. Instead everyone seems to think small, short-term and simply lacks any ambition or motivation. For sure not a single lesson learned so far.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Considering that the obvious best way to be sure is to go ahead and do the research, this is extremely disingenuous. It's not as if there are actual reasons for this separation, it's completely arbitrary. But that was expected, any separation is purely political and ideological, far more about preserving tradition than getting things right.

    Although quite frankly this is simply an assertion of incompetence. It shows a complete lack of motivation and interest at helping people suffering, it's all politics all the time. This stuff where they abuse uncertainty and make everything "mysterious" but then make zero effort to know better is just so mindless, I don't understand how anyone can care so little about their job.

    If you don't know and care about the outcome you go ahead and do the work. If you don't know and care to know, this is how you do it. It's trash but it works.
     
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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  10. Solstice

    Solstice Senior Member (Voting Rights)

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    It all feels a bit like a dick-measuring contest. From what I've seen NL, America, GB and Australia are freeing up funds and there are strong calls from some other countries to follow suit. Thought I saw something about the need to invest in research from Germany. Why not pool resources idd. I think it could be helpful to explore different avenues of attack, but something like GWAS sorta stands with the size of the project? Maybe I'm missing something and there's a lot more collaboration than I thought.
     
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  11. Sean

    Sean Moderator Staff Member

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  12. Sean

    Sean Moderator Staff Member

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    I happen to agree with the view that we should not conflate ME with the current definition of LC. That definition is too broad and non-specific, and we have seen some recent examples of how that will be misused against ME, and any connection with LC.

    What we should argue is that there is highly likely to be a subset of Covid patients who will develop ME as a result of Covid infection/s, as has been the historical pattern with various infectious agents, and that they are being obscured by the current problematic definition of LC. Plus that the current definition of LC is simply not fit for purpose and should be discarded.

    I think research into both should be notionally separate, but should be also be actively looking out for overlap from both sides, with lots of communication between different research groups and clinical teams, and where appropriate pooling of resources.

    Also, this report has done more to raise the profile of ME, in a fairly useful positive way, than anything thus far in Australia.

    Is it imperfect, could it have gone further, does it contain deficiencies and even some dangers? Yes. But it is probably the most favourable and reasonable formal report we could have expected in the circumstances, and has the potential to benefit both groups of patients.

    The fact that they are highlighting the importance of indoor air quality, including masking, and vaccination, suggests strongly to me they have not uncritically bought into the psychosomatic agenda. These are not issues you would willingly choose to raise and prosecute in the current divisive socio-political climate on Covid, nor under the undue influence of the psychosomatic view.

    (Indoor air quality on its own is a no-brainer win-win, independent of LC or ME. Major reform to building standards here in Oz on this issue is long overdue.)
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Long COVID baffles medical professionals, but Australia is helping solve the mystery
    interview (audio and transcript)
    https://www.watoday.com.au/national...elping-solve-the-mystery-20230425-p5d34i.html

    https://www.watoday.com.au/national...elping-solve-the-mystery-20230425-p5d34i.html
     
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  14. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    The Australian Government has finally responded to the recommendations made by the parliamentary inquiry into Long COVID.

    Recommendation 8 from the Inquiry was about ME/CFS:

    The government's response to Recommendation 8:

    As has been pointed out on social media, the response is basically to 'do nothing' as all of the above are things that it is already doing.

    Most disappointingly, there is no allocation of funds to update Australia's appalling and outdated ME/CFS clinical guidelines (as was recommended in the NHMRC's 2019 report).


    Health Minister's statement can be found here.

    Full Government response here.
     
    Last edited: Feb 16, 2024
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