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

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. )

 

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:

 

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

 

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.

 

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.

 

Emerge Australia press release
https://mailchi.mp/emerge.org.au/stop-rest-pace-march23-1339285

 

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.

 

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

 

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.