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

Improve ventilation and make antiviral drug widely available, long COVID inquiry hears
GPs say they are unable to properly care for the hundreds of thousands of Australians with long COVID due to outdated Medicare rules, and a leading scientist has called for wider access to a drug that potentially prevents the disease.

At a federal parliamentary inquiry into long COVID on Monday, experts said patients with the disease often had a wide range of symptoms that needed complex, careful management, not just from a GP but also a team of specialists – including physiotherapists and psychologists.
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At a federal parliamentary inquiry into long COVID on Monday, experts said patients with the disease often had a wide range of symptoms that needed complex, careful management, not just from a GP but also a team of specialists – including physiotherapists and psychologists.

And the evidence for this is...?
 
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.
 
not just from a GP but also a team of specialists – including physiotherapists and psychologists.

Interesting how no other specialty is ever named but physiotherapists and psychologists.

I wonder why that is.
 
Sean said:
Interesting how no other specialty is ever named but physiotherapists and psychologists.

I wonder why that is.
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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”.
 
hibiscuswahine said:
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.
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The bitter irony being that this approach can only end up far more costly on every possible measure than if they had simply said we got nothing to offer. At least then we could have a realistic place from which to start a genuinely productive research program.

But then that is an admission that they have wasted at least 35 years of research funds, clinical resources, and most of all patients lives with self-indulgent wallowing in their psychosomatic cesspit, and left the world much more poorly prepared for Long Covid than we could have been.

And we can't have that, can we.

If I had not lived through it and seen it all up close, I too would have trouble believing it has been so badly, systematically, and cruelly botched, and the resistance to correcting it so ferocious, dirty, and gutless.

But here we are. It is all true and still happening. :grumpy:
 
Sean said:
At a federal parliamentary inquiry into long COVID on Monday, experts said patients with the disease often had a wide range of symptoms that needed complex, careful management, not just from a GP but also a team of specialists – including physiotherapists and psychologists.

And the evidence for this is...?
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According to the RACGP, it is based on "NHMRC Level 1 evidence" which would be Cochrane's flawed exercise review.
 
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Lots of big claims in this thread. From unpublished research. Long thread so will try to capture the most salient.
What I learned at Long Covid inquiry: Prof Jeremy Nicholson
@ANPC_MU
“Long covid is hybrid of multiple diseases, I’m not sure it can be properly defined b/c of heterogeneity of the disease, in time as well as in symptoms & biochemical properties, we get different severities,
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“We found although Covid is extremely heterogeneous, everything pushes in same direction whether you’re from Africa, Asia or Aus- biochemistry movement is same & it simplifies modelling We recently worked with Cambridge using metabolic modelling to predict who’ll get long covid,
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“and who won’t & we think in future we’ll be able to predict long Covid systematic subsets too What’s surprising is disease course is set incredibly early - within 1st day of infection you have a metabolic profile which predicts outcome whether you recover, get long covid or die
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Evidence is mixed, if you get huge viral load, more likely severe disease, but not linearly related. You can have small viral load & depending on immune response, get serious disease
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“Even if mild covid, can get serious long covid b/c not the virus, it's immune response to virus that drives it Other important & underestimated thing is children Although children only have mild respiratory disease generally, metabolically they’re very seriously ill
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We’ve been working with head of pediatrics at Harvard, looking at children who got mild covid, but metabolically they're same as adults on intubation - it’s quite shocking Poss we’ve created a new disease risk for children which might change their risk for almost anything,
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“even changes in life expectancy. I hope it’s not true, but we need to spend a lot more effort looking at mildly affected people & how they progress & esp children My feeling is that any inflammatory condition accelerates covid & covid accelerates any inflammatory condition,
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“joint pain, gout, arthritis etc, made worse by covid
Not enough recognition that covid has changed us long term through inflammatory properties, so any inflammatory disease risk is ⬆️ in pop. Most important long term economic costs of covid will be chronic disease uptick
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In Cambridge study, we measured patients for > yr, extensive immunology & metabolic profiling. In 1st week of Covid, can build mathematical model to accurately predict likelihood of long covid
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“We haven’t nailed it down to say neurological symptoms, but getting 1 or more long covid symptoms persistent at yr, we could nail that down early- disease course set early too
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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.
 
Re Professor Jeremy Nicholson, quoted in rvallee's post
Professor Jeremy Nicholson, the director of the Australian National Phenome Centre at Murdoch University
Phenome? Metabolic phenotyping I think.

Radio NZ interview - text article
Prof Jeremy Nicholson: the link between Long Covid and heart disease

He sounds ok. He's had a brush with Long Covid himself
Following a trip to Italy in February 2020, Nicholson believed the lingering fatigue he was experiencing upon his return to Australia was just jetlag. When he continued to feel tired several weeks later he went to his GP and got "tested for everything", though in early March 2020, no test for Covid-19 yet existed.

The tests revealed he had diabetes, some abnormal liver function and "a few other bits and pieces, but no infection of any sort that could be detected".

It wasn't until his team began building the diagnostic tests for Covid-19 biomarkers and he submitted to a test himself that he had any inkling he may have had the disease. "My biochemistry was like [that of] a Covid patient and this was three or four months after I'd actually had the episode (of fatigue)," he says. Subsequent antibody testing confirmed he had been exposed to Covid-19.
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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:

Dr Vine: ... If you look at some of the risk factors for long COVID, pre-existing anxiety and depression come out as risk factors. It's interesting that one of the other risk factors for subsequent mental health problems is those who have very driven personalities, who are used to being very high-achieving. It is also fair to say that, while those symptoms of anxiety and depression, some symptoms consistent with post-traumatic stress disorder, are fairly common in the early part of long COVID, most of the research would tend to suggest that they do return to baseline over time. One of the most important things is to give people hope of that recovery, techniques and cognitive behavioural modules that can help them to cope with that during that time. I don't think there has been evidence that people with long COVID have been predominant in accessing the additional sessions that have now been removed. Most people can have better access if they need to. One of the main findings is not to over-diagnose and over-pathologise mental illness, but to make sure that people do have those techniques to help them.
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Prof. Irving: Cognitive tests in young adults with significant brain fog haven't found any measurable abnormality except universal hypervigilance, like a cat on a hot tin roof. That is a manageable, treatable trait. You can actually decondition people to being hypervigilant.

Prof. Lloyd: If we broaden the perspective to other post-infective fatigue syndromes, there is already an evidence base that the cognitive difficulties, the brain fog, can be a dominant symptom. I think that's true also in long COVID. It can be the thing that stops people getting back to work, primarily. And cognitive remediation is effective: a brain-training graded exercise paradigm is effective in improving performance, which fits with what Louis was just saying.
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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.

Our lab is relatively young. It's less than four years old. I brought my team from Imperial College London, where I have been for 21 years, latterly as head of surgery and cancer. So I've got clinical experience in employing translational technologies as well as the actual scientific side.
[...]
Long COVID is a hybrid of multiple diseases. I'm not sure that it can never be properly defined because of the heterogeneity of the disease. It's heterogeneous in time as well as in symptoms and biochemical properties. People have different severities and different rates of development. They have different rates of development of long COVID. They have different recoveries of long COVID. They have different sub-organ systems that are affected in long COVID.

Furthermore, there is a lot of other underlying biochemistry that is perturbed in COVID and long COVID that isn't necessarily related directly to symptoms. This is what we call occult long COVID. The person is biochemically extremely badly deranged. They don't necessarily feel any symptoms, but the biochemical derangement will change their long-term disease risks. To me this is one of the things that has been underestimated in the community and by physicians, simply because they haven't had the right sorts of measurements.
[...]
Fortunately, mainly through our Imperial College London connections, we've been able to establish an international network of groups, some of which have laboratory equipment similar to ours, so we can harmonise and exchange data. They are groups from right around the world, including Cambridge and Harvard universities, where we've actually obtained lots of samples. We have tens of thousands of samples from around the world. This is powerful in a number of different ways. Firstly, it statistically powers us in a way that we would not have been able to achieve if we had just been working out of Western Australia. Secondly, it allows us to cross model the disease across multiple ethnic backgrounds and different environmental backgrounds.
[...]
Understanding the heterogeneity is critically important, and we very recently published a paper with Cambridge where we were able to use this method of modelling to predict who's going to get long COVID and who isn't. We think that in the future we'll be able to predict systematic subsets of long COVID as well. What is surprising and almost shocking is that the disease course is set incredibly early. Within the first day of infection you have a metabolic profile which predicts the outcome, and that can be whether you recover, whether you get long COVID or whether you're going to die, if you're an uninfected person.
[...]
There are lots of different biochemical systems, and there are lots of different organs, which have—if the liver is affected, for instance, or the gut is affected, we've got neurological derangements. Although those have some commonalities they also have distinct metabolic features. For instance, one of the pathways that we've found is highly disorganised is the tryptophan to kynurenine pathway, and that is involved in lots of regulatory processes related to neurofunction. There are lots of neurodiseases that have got this pathway disordered, and it's profoundly disordered in COVID-19, so we think that the disorders of that pathway in particular are probably related to the neurological and the disease risk that you're going to get.
[...]
This is a huge diversity of biochemistry, but it's all driven immunologically. Most of the systemic effects are the effects of the immune system actually fighting off the virus. In the work we've done with Cambridge we've found that people who get very mild respiratory symptoms have what we call a robust CD8 T cell response.
[...]
But, in the process of those cells destroying the virus and the virus-containing cells, they also release loads and loads of cytokines, which switch on multiple pathways. Although the pathways are actually quite diverse, and in different organ systems, they're all driven by the immunological response of the body, and long COVID is an immunological disease.
[...]
The disease is only a few years old. We know very little about it and it's also dynamically evolving in time. It's a genetically unstable disease—it probably will never stabilise—so it's going to keep throwing new things at us for years to come. So we need to continue the basic research. But in particular we need to couple that with very practical clinical sampling and data collection. And so far, Australia has not gone brilliantly well on that.
[...]
We can get metabolic signatures that predict who is likely to recover. We can get that very, very early on in the disease course. That means that if they don't recover, it means they're going to get long COVID or possibly even die. What we are trying to do at the moment is to distil out that complex information, to say, 'Is there a particular phenotype associated with neuro damage; is there one associated with cardiovascular risk; is there one associated with diabetes?' We're confident that information is in there, but we haven't done enough research yet to refine the mathematical models that allow it to be used in a truly clinical sense, where doctors say, 'I know this; we're going to do that.' We are probably one or two years away from being able to do that.
[...]
The other thing is that there is an opportunity to do something a bit more visionary here. What we do and what we did—and we have a major program at Imperial College London—is systems medicine, where the whole philosophy of diagnosis and intervention is around this integrated model of the body. Still in Australia, I find— this is not designed to be rude but it's just what I find—people are still very siloed in terms of what they do: a hepatologist here, a gastroenterologist there or whatever it is. In the UK, the NIHR in particular fosters interdisciplinary research to a level that doesn't exist in Australia at the moment. And I think it's a pity. It's missing a trick, because you can really accelerate developments if you have multidisciplinary teams working on projects—any project. We call that systems medicine.
[...]
I don't think there's any fundamental evidence that the different variants are different in terms of the symptoms and the sub-varieties that they cause. There may be some slight shift between, say, neuro versus diabetes. There might be. I haven't seen the evidence for it. But bear in mind that most of these systemic effects are immunologically driven. Each of the variants is still driving the immune system; it's just some are stronger at doing it than others. They're more virulent than others, if you like.
[...]
The other thing, which I did mention in the submission, which I think is also underestimated and important is children. There's nothing that we worry about more than our children. And although children only have mild respiratory disease generally—there's also the multiple inflammatory syndrome of course—metabolically they're very seriously ill. We've been working with Alessio Fasano, who's head of paediatrics at Harvard. We've been looking at children who've got really quite mild COVID but metabolically are the same as adults on intubation. It's quite shocking. We're just writing that up at the moment. And what that means to me is that, although we haven't seen it yet, there's a possibility that we've created a new set of disease risks for our children which might change their risk for almost anything, including changes in their life expectancy.
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This post has been copied and some of the following posts moved from the News from Australia thread to keep the discussion in one place.

The devil will be in the details. But on the face of it this looks quite promising. They seem to have understood this is not well understood yet, needs a multi-factor approach, with long-term commitment, the involvement of all relevant parties, and the relevance of ME to it all.

Parliamentary Report on Long Covid
  • establishing a better COVID and long COVID data collection system
  • reviewing antiviral eligibility
  • providing more support and education for GPs to treat long COVID
  • developing evidence-based guidelines for diagnosis and treatment
  • funding state health departments to set up long COVID clinics at public hospitals
  • setting up an expert panel to advise on the impact of poor indoor air quality and ventilation on the economy
  • funding more research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
  • a national summit into Australia's response to COVID, including long COVID
 
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