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

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:

• 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?

 

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

 

That looks great, @Art Vandelay

 

Thanks @rvallee, a good reminder that the deadline for submissions to this inquiry is coming up.

 

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.

 

I put a few words in, but holy feck was that website a nightmare to negotiate. Couldn't get it to work for me, so ended up submitting via email.

Managed it with minutes to spare (I think, allowing for different time zones).

 

That’s a good report from the Facebook group