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

Hutan

Hutan

Moderator
Staff member
https://www.aph.gov.au/Parliamentar...alth_Aged_Care_and_Sport/LongandrepeatedCOVID

Following a referral on 1 September 2022 from the Minister for Health and Aged Care, the Hon Mark Butler MP, the House Standing Committee on Health, Aged Care and Sport will inquire into and report on Long COVID and Repeated COVID Infections.

Submissions for this inquiry will close on 18 November 2022.

People and organisations interested in making a submission should please ensure that they:

• respond directly to at least one of the inquiry terms of reference, including focusing on long COVID and/or repeated

COVID infections (as opposed to COVID generally); and

• keep the submission as concise as possible (ideally no more than 20 pages).
 
Terms of reference:

The House of Representatives Standing Committee on Health, Aged Care and Sport will inquire into and report on:

1. The patient experience in Australia of long COVID and/or repeated COVID infections, particularly diagnosis and treatment;

2. The experience of healthcare services providers supporting patients with long COVID and/or repeated COVID infections;

3. Research into the potential and known effects, causes, risk factors, prevalence, management, and treatment of long COVID and/or repeated COVID infections in Australia;

4. The health, social, educational and economic impacts in Australia on individuals who develop long COVID and/or have repeated COVID infections, their families, and the broader community, including for groups that face a greater risk of serious illness due to factors such as age, existing health conditions, disability and background;

5. The impact of long COVID and/or repeated COVID infections on Australia’s overall health system, particularly in relation to deferred treatment, reduced health screening, postponed elective surgery, and increased risk of various conditions including cardiovascular, neurological and immunological conditions in the general population; and

6. Best practice responses regarding the prevention, diagnosis and treatment of long COVID and/or repeated COVID infections, both in Australia and internationally.


 
Just jotting some points and noting the points made in this recent post that I think might be a useful part of responses:
BrightCandle said:
I don't really see a lot of point in ME/CFS and Long covid specialists at this point if they aren't doing research. Your local GP could be throwing pain and sleep meds your way to reduce the severity of the condition and a leaflet on the condition and how to pace with a link to the guidelines. Then the rest of the money ought to just go into research projects looking for root causes and testing promising drugs in trials. There just isn't a lot of point wasting vast sums on clinics everywhere that have nothing to offer patients other than a leaflet on what they have and how to pace. Doing basic tests on 20,000 patients is pointless, 5 novel tests on 10 patients makes a lot more sense.

My experience is so far post NICE and Long Covid not a lot has changed with doctors, 9/10 are still a problem. I am not seeing the script flipped and I am not seeing more than about 1 in 10 long haulers on social media suggesting they got anything but gaslit by doctors. Quite a few have even got into clinics and then been suggested exercise. I am not as optimistic that Long Covid has done anything but cast shade on ME/CFS at this point, reproduced a lot of research as if it was novel and suck up the funding and time and research. I still don't think the opportunity around Long Covid, to see it develop in real time and try to catch the first thing that goes wrong, has been attempted yet so we still don't have that potential root cause of all the downstream stuff to follow and the chance of getting it is fading with time.
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  • the fact that LongCovid is a term covering a whole range of health issues, but post-Covid-19 ME/CFS is a significant subset (the tag "LC=ME/CFS" will give some evidence)
  • the need to build on ME/CFS research rather than reinvent the wheel; the fact that there are no treatments for ME/CFS
  • Risk of desperate people turning to quackery, to unevidenced treatments (including those provided by the medical system)
  • For post-Covid-19 ME/CFS - the tendency for the medical system to label diseases that are not yet understood as psychosomatic, and the considerable harm that this labelling can do (psychological harm, withdrawal of family and community support, prejudice in the medical system denying people proper treatment for other health issues)
  • the lack of evidence for interventions such as psychotherapy aiming to fix the disease; exercise therapies
What else?
 
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Further on the prevalence and issue of subsets, some points about the problems with so many of the epidemiological studies done so far. Yes, the issue of Long Covid is substantial, but it doesn't help with a story of significant disability and a biological cause to be suggesting that half of everyone who gets Covid and quite a chunk of the people who appear to have not had Covid at all develop Long Covid.

Size - often too small
Selection - often voluntary and biased to people experiencing symptoms, or who were hospitalised;

Accuracy of Covid-19 infection status - often ignores the false positives in people in the non-Covid group
Accuracy of symptom reporting - often no proper screening of patients - just online self-reporting. Conversely, often medical staff or parents answering for the person concerned, without detailed knowledge of the person's experience.

Accounting for pre-existing symptoms - often don't control for symptoms existing before the infection
Accounting for frequency/severity/impact of symptoms, just absence or presence How diagnostic of anything is a question 'do you have headaches?' going to be?

Separate reporting of symptoms likely to have very different causes - reporting and analysis of odds ratios that lump things like depression, anxiety, post-traumatic distress syndrome, respiratory symptoms, lack of smell and the things we would associate with ME/CFS such as fatigue, joint/muscle pain and neurological-cognitive disorders together.
e.g. "In this study, persistent symptoms were more frequent in older patients and in those with more comorbidities."

Assessment of PEM

Psychosomatic inference - issues around questionaires including physical symptoms as signs of a mood disorder; pathologisation of natural reactions to loss and uncertainty

Length of time - assessments done at different times lumped together
 
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Thanks for raising this @Hutan My specialist encouraged me to lodge a submission.

I'm not really well enough to put together anything comprehensive, so I thought I'd try to write a 2-3 page submission that focuses on a few points:
  1. Post-viral syndromes aren't new.
  2. Australian doctors are poorly educated about PVS and hold significant prejudices against people with them.
  3. Due to this ignorance, Australians were not warned about the possibility of PVS following covid infection.
    (whereas those of us with ME/CFS predicted this)

  4. PVS can develop into ME/CFS.
  5. A significant number of people will be severely disabled for life following covid infection.

  6. Australia's ME/CFS guidelines are garbage.
  7. These guidelines contribute to the stigma, misinformation etc about PVS.

  8. Poor education and ME/CFS guidelines have been reflected in Australia's poor quality LC treatment guidelines (eg, NSW Health).
  9. The result is that people with LC are also facing stigma and discrimination and are being pushed into treatments that are inappropriate.

  10. LC clinics are already using non-evidenced treatments that are harmful to people with PVS.
  11. Other patients have been referred to dubious private 'fatigue' clinics.
  12. Given that many with PVS recover naturally over time, it is important that any clinical trials use appropriate controls and objective outcome measures.
 
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Moved post
International friends with #LongCovid and/or #MECFS, international researchers, orgs & clinicians - you are allowed to submit your thoughts & experience to the Australian Parliamentary Inquiry into LC. You can help shape the future of treatment & care Australians #pwLC:
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**Submissions close November 18th** The awesome
@MsAmyLewis
created this form to make it even easier to share your experience in #LongCovid and Repeat Infections: Best practice advice could come from orgs, researchers, clinicians or individuals.
Click to expand...
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I'm not sure how to submit something, the form asks about experience in Australia, but international contributions are said to be OK.
 
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All familiar, all known issues before, all still ignored. The same ugly discrimination and disregard for patients.
Sue J on Twitter said:
Reading today’s Long Covid Inquiry submissions is a depressing eye opener We desperately needed this Inquiry - we need the reality check that we are failing Aust Long Covid patients trying to get healthcare & support - their shared lived experiences are unacceptable ‍♀️
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“I’ve seen GP several times who said “this is happening to a lot of people”, I ‘just need to get on with it’ & ‘there’s nothing that can be done’ “I was referred to LC clinic at Royal Adelaide Hospital in July 22, yet to be notified about an appointment”
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“There is no real treatment & a complete lack of support from the healthcare industry” “I sought help from naturopaths & prescribed a huge raft of herbal supplements – which has cost a lot of money for a treatment that lacks any evidence as well as optometrist & physiotherapist”
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“Nobody seems able to measure or quote number of LC sufferers in Aust to either manage resources for treatment or scope economic impact of the problem effectively. The long covid community feel unmeasured, unheard and definitely under-resourced”
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“I have found it difficult to advocate for myself due to confusion & brain fog I saw a Physio who I educated as she wasn’t aware of my limitations. I saw an ex physiologist who didn’t even consider my symptoms & suggested huge exercise that sent me into a crash lasting weeks”
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“The ex physiologist didn’t understand muscle fatigue & post exertional malaise I recently went to new GP as mine unavailable & twice he asked pointedly if I had depression We need guidelines for practitioners on LC treatment inc GP’s, physios, ex physiologists & dieticians
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I have the feeling that these tweets have been posted elsewhere on the forum but I am unable to find them. The head of the Royal Melbourne's Long Covid clinic made some problematic remarks to the Senate Inquiry:



The Hansard for the hearing can be found here. I don't have the cognitive capacity to slog through it all right now. I did pick up a few clueless remarks about "high achievers".
 
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A reminder that today is the last day for submissions. If you have a little time, perhaps you can pick just a couple of the points above and make a submission. The evidence received by the Inquiry in that Hansard record is awful - lots of multi-disciplinary holistic care and graded activity. An enormous re-invention of a wheel that didn't work the first time.

Here's the link to make the submission:
https://www.aph.gov.au/Parliamentar...alth_Aged_Care_and_Sport/LongandrepeatedCOVID

You have to set up a My Parliament account, but that is quick and easy. I had a problem connecting through to make the submission though and tried a couple of browsers. In the end I emailed it to Health.Reps@aph.gov.au.
 
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Hutan said:
A reminder that today is the last day for submissions. If you have a little time, perhaps you can pick just a couple of the points above and make a submission. The evidence received by the Inquiry in that Hansard record is awful - lots of multi-disciplinary holistic care and graded activity. An enormous re-invention of a wheel that didn't work the first time.

Here's the link to make the submission:
https://www.aph.gov.au/Parliamentar...alth_Aged_Care_and_Sport/LongandrepeatedCOVID

You have to set up a My Parliament account, but that is quick and easy. I had a problem connecting through to make the submission though and tried a couple of browsers. In the end I emailed it to Health.Reps@aph.gov.au.
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Well done @Hutan. I had a few problems with creating a My Parliament account but my submission seemed to upload in the end. Unfortunately I had to push myself quite hard these past few days to finish my submission with the result that I am feeling very unwell today.

I have had a quick look at some of submissions published so far. The submission from Emerge (sub.67) looks pretty good.
 
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Mary-Louise McLaws on Twitter said:
We knew long COVID was real over 12mths ago. Please read our submission to current Federal Enquiry (link below) and see attached key findings (thank you Dominic Meagher @dom_ma) Thank you esteemed colleagues for collaboration: @GraftonQuentin, Long Chu, @Tom_Kompas, and @DanSuan2 https://t.co/yyxld0prop
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Much earlier than 12 months ago, but still.
 
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The Long COVID clinic submissions I read are beyond embarrassing. No news to anyone here but the knowledge, intellectual and ethical gap between many of these clinicians and both the biomedical researchers and patients is cavernous.

Art Vandelay said:
Submission #311 is from a young woman who has battled horrific gaslighting since becoming ill in 2020. It is shocking.
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Thank you for highlighing that one. Shocking is an understatement. I hope the committee pay that narrative and others the attention they richly deserve. An utter indictment of the medical system.
 
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