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

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.
 
A news article summarising the recommendations:

Albanese government pledges $50m for long Covid research as inquiry calls for action

The committee made recommendations including that the Australian government:

  • Establish and fund a single Covid-19 database to be administered by the Australian Centre for Disease Control, which is currently in development. This database would capture data on Covid infections, hospitalisations, deaths and vaccination rates; and long Covid diagnoses.

  • Use the World Health Organization definition of long Covid for the time being, but work with the states and territories to review the definition of long Covid as more research becomes available.

  • Establish a nationally coordinated research program into Covid and long Covid.

  • Task the pharmaceutical benefits advisory committee with regularly reviewing the benefits of antiviral treatments for Covid-19, with a view to expanding the list of groups eligible to access these treatments through the pharmaceutical benefits scheme.

  • Support and educate primary healthcare providers to diagnose long Covid and to help manage those suffering from it.

  • Establish and fund a multidisciplinary advisory body including ventilation experts, architects, aerosol scientists, industry, building code regulators and public health experts to develop national indoor air quality standards.

  • Consider a comprehensive summit into the Covid-19 pandemic and Australia’s past and current response

  • Provide funding for research into and patient support for those affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an often debilitating post-viral condition.
Labor MP Dr Mike Freelander, chair of the long Covid inquiry committee, said in the report’s foreword that the committee was “hampered by a lack of specific data and the lack of a concise definition of what constitutes long Covid”.
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Edit:

Recommendation 8 of the report is for ME/CFS:

The Committee recommends funding be made available for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and patient support and that this funding should be allocated in consultation with peak bodies for ME/CFS and with note of the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council.
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(The NHMRC report is discussed on the fourm here. )
 
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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:

We have received many submissions from individuals suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Whilst there may be some crossover with long COVID, we believe that long COVID is a separate issue to this. Nevertheless, the ME/CFS community should be supported and researched developed to assist them and provide support.
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The addendum:

Clinical evidence about a possible overlap between ME/CFS and long COVID is not yet clear. The Committee notes the clinical parallels between ME/CFS and long COVID. However, in the absence of strong evidence establishing that these are the same condition, the Committee agrees with the AIHW that these conditions should not be conflated.
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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.
Education to help GPs diagnose and treat long COVID should be part of Continuing Professional Development (CPD), the committee overseeing an inquiry into the condition has said.

The proposal is among the recommendations put forward by the Standing Committee on Health, Aged Care and Sport, which released its report into long COVID and repeated COVID infections on Monday.

It also called for a review of the MBS chronic disease management item and suggests that most support for the conditions is likely to come from primary care, particularly GPs.

In its submission to the inquiry, the RACGP said that chronic disease GP Management Plans (GPMPs) could help manage long COVID.

However, it also said the item’s stipulation that a medical condition needs to be present for at least six months is ‘causing hesitancy’ among GPs and ‘reducing patient access to early, subsidised and coordinated multidisciplinary care, and the opportunity to reduce the burden of disease’.

The inquiry, which was chaired by Dr Mike Freelander, a paediatrician turned MP, received feedback from hundreds of individuals as well as input from patient and health organisations.
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https://www1.racgp.org.au/newsgp/clinical/long-covid-education-should-be-part-of-cpd-report
 
Sean said:
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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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.
 
Art Vandelay said:
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:
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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.
 
rvallee said:
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.
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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.
 
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.)
 
Long COVID baffles medical professionals, but Australia is helping solve the mystery
After reading countless testimonies from people with long COVID, I know now that I was lucky the post-viral fatigue didn’t derail my life.

Melbourne woman Alicia Newnham, who contracted long COVID last year and spoke about her experiences for our series on the illness, wasn’t so lucky.
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interview (audio and transcript)
https://www.watoday.com.au/national...elping-solve-the-mystery-20230425-p5d34i.html

Why long COVID research isn’t starting from scratch
Australian National University virologist Brett Lidbury has researched myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for more than a decade. He believes long COVID is a post-viral version of ME/CFS.

“My big concern is that there was some commentary out and about that long COVID is brand new, and that we haven’t seen it before. Which is just not true,” says Lidbury.

He urged the inquiry to consider three decades of studies into ME/CFS, arguing the research provided a crucial head start for understanding long COVID, a condition that can manifest in 200 different symptoms.

Lidbury is on the hunt for biomarkers that could help identify ME/CFS in a blood test – and also help diagnose long COVID.

“There probably won’t be a magic bullet [for long COVID diagnosis] where you just have one particular protein or one cell that goes up or down due to illness,” he says. “But what has been promising is the study of unique patterns in lots of data collected from people with ME/CFS or post-viral fatigue, and people without it.”
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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 Committee recommends funding be made available for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and patient support and that this funding should be allocated in consultation with peak bodies for ME/CFS and with note of the recommendations of the ME/CFS Advisory Committee’s 2019 report to the National Health and Medical Research Council.
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The government's response to Recommendation 8:

The Australian Government supports in-principle the recommendation to support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research and patient supports.

The Government recognises the challenges faced by individuals with ME/CFS in accessing support, including through primary care. This issue was also identified by the Strengthening Medicare Taskforce.

People with ME/CFS are currently able to access support through time-tiered GP general attendance items and MBS chronic disease management items. People with ME/CFS will also likely benefit from recent reforms to primary care that enable care to be delivered in more tailored and efficient ways to better address patient needs.

The Government is providing $880,000 under Program 1.5 Preventive Health and Chronic Disease Support over four years (2022-23 to 2025-26) to Emerge Australia, a patient-focused organisation for Australians living with ME/CFS. The funding will assist in improving support services provided to Australians living with ME/CFS through the provision of a nurse-led patient information and support service, resource development, advocacy, and the facilitation of community support groups, including online support.

Additionally, the Government has previously provided $3.3 million through the NHMRC’s Targeted Calls for Research scheme and $1.27 million through Ideas Grants to fund four projects to better understand the causes and disease processes of ME/CFS to improve its diagnosis, management and treatment.
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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.
 
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