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

RACGP to advocate for more support at long COVID inquiry
https://www1.racgp.org.au/newsgp/clinical/racgp-to-advocate-for-more-support-at-long-covid-i

‘There’s been an ignored urgency to have a strategic response to post-virus syndromes in general,’ he said.

‘People who have chronic fatigue syndrome and other post-viral symptoms get quite a raw deal in the current environment, because there’s not enough information and not enough coordination or support for them.​

Passive voice, as if those things were just natural and hadn't unfolded over more than a century. None of this was inevitable. Patients who raised those concerns were dismissed with prejudice, our rights null and void. It's a minor improvement that they can say those things, but they can't pretend they're not to blame and produce good outcomes.

Trying to fix this while avoiding any blame is as delusional here as absolving tobacco companies of the choices they made. Choices were made over decades through solid evidence that those choices were horrible. In both cases. It even warrants massive compensation, but since there is no for-profit industry involved here, not gonna happen.

Unless there's accountability, it will just keep going anyway. The same way as before: changing the labels while keeping everything underneath the same. This will never stop until blame is fully placed and the conditions that lead to this are corrected. Which means massively reforming EBM and excising everything BPS while creating real accountability that respects patients as people, not just products moving on an assembly line. Those things are unlikely to happen soon enough.

 

Yes, they really believe physio and psych can fix you. They should have an occupational therapist who can help with disability assessments and aids and access disability allowance/benefits.

But no, then they would have to open their eyes and actually state publicly that there is often no rehabilitation prospects for many people and oops, how inconvenient to have further economic consequences to the country.

BPS meddling in the background -we can’t tell people there is no hope, they will become unproductive to “society”.

 

According to the RACGP, it is based on "NHMRC Level 1 evidence" which would be Cochrane's flawed exercise review.

 

Lots of big claims in this thread. From unpublished research. Long thread so will try to capture the most salient.

https://twitter.com/user/status/1628477548236800001


Several mentions that they'd need an equivalent of UK's NIHR to streamline the effort, but that's not much hope given what little they have done, and nothing useful has come out of it yet, most of it directly wasted on BPS pet projects anyway.

 

Wow those abnormal illness beliefs sure do declare themselves quickly huh? (cc Paul Garner).

 

The transcript for the recent Canberra public hearing for the Inquiry has been released. ME/CFS patient advocates Michelle O'Brien and Penelope McMillan acquitted themselves well. Michelle's full statement has been published as submission #559. In particular she calls out the Committee for inviting quacks like Lloyd to participate.

The so-called Roundtable of experts (organised jointly by the Australian Academy of Science and the Australian Academy of Health and Medical Sciences) held in the afternoon was quite often a display of ignorance, incompetence and, in some cases, outright prejudice from the Australian medical profession:

 

Ah yes, the usual "this symptom is not a big deal and it's treatable anyway because i say so". No evidence required. Meanwhile lives keep getting ruined.

 

At the very least, they are displaying exactly why things are FUBAR. These people are the reason why there is no help. It could not be any more clear, this is an attitude problem more than anything.

They are essentially praising the very thing that harms millions, in a process that is about that very needless suffering. Strong echoes of tobacco executives lying about their product being safe.

It's actually good to have this evidence. These people are exactly like HIV deniers, they are impertinent and ignorant of the problem. What the patients are describing is basically exactly what these people bring with their biases and ignorance.

And they seem proud of it. This really exposes the massive gaps in feedback loops in medicine, where the very people causing massive harm to millions are actually *boasting* about it in a hearing process that is all about that suffering.

Actually, very strong echoes of Enron as well. "They're not confessing, they're bragging". They're freaking proud of it. Absurd. Medicine needs massive, gigantic top-to-bottom reforms. This system is not built for us, it's a supply-side approach that is blind to the world outside their immediate sight.

 

Chewing those thoughts a bit, I can't escape the fact that the people who bring those comments literally don't understand why this commission is happening at all. Legislatures, especially in several countries, do not get involved in medical matters when medicine handles them well.

The comments from patients all reflect the same reality: the consequences of the illness being made massively worse by dysfunctional healthcare that openly discriminates, even mocks, and has nothing to offer, having clearly failed to learn anything in the 3 years since.

This is what it's really about. It's not some open-ended discussion to see how things are going. It's happening because things are as possibly FUBAR as they can, it's not a sustainable situation and something has to happen.

But not according to the people who are doing (or maybe I should say duing?) that failure. In fact they think it's all fine and they are handling this perfectly. Even as nearly all the comments from the public detail exactly the opposite.

It's just staggering hubris. The commission is about their failure, and all they can think about is themselves. They don't hear the patients in their clinics, and they sure don't listen to them as part of this commission either. They're monologuing about how great they're doing. Absurd. It's beyond satire. There is really no equivalent failure of expertise anywhere else in any other context.

And they're freaking bragging about it. It's clear going forward that we are going to need protections from abusive healthcare like this. It's not a system that can work itself out with absolute authority.

 

Following on from @rvallee's post of the Twitter summary. Abridged quotes from Jeremy Nicholson's testimony (page 31 on), my bolding.

 

The paper he refers to is A patient-centric modeling framework captures recovery from SARS-CoV-2 infection (2022, Nature Immunology)