News from Australia

The Australian government committed $50 million to research Long Covid. They've set up an expert panel to advise "on research investments under the Medical Research Future Fund (MRFF) to improve outcomes for people experiencing Post-Acute Sequelae of COVID-19 (PASC). PASC is also known as Long COVID."

Post-Acute Sequelae of COVID-19 (PASC) Research Plan Expert Advisory Panel

Of course, Andrew Lloyd has managed to get himself appointed to the panel. Note that he claims to have 'nil' declarations of interest.

Apparently some of the information contained in the panel's terms of reference is based on Lloyd's submission to the government Inquiry into LC. There is this:

Categorisation of PASC

There are broadly 3 categories through which the term ‘PASC’ can be understood, as each generally requires different levels and types of health care.

1. Post-viral syndrome: Short-term and most common. Symptoms of post-viral syndrome generally self-resolve within 3 to 6 months. People with post-viral syndrome may require management in primary care, including support and reassurance from their General Practitioner.

2. Disease and organ-specific conditions: Some people will experience medical conditions following COVID-19 that are medically explainable and readily diagnosable. In addition to management in primary care, supported by allied health, these people will require access to specialist care for management.

3. Medically unexplained conditions: A small proportion of people will experience medically unexplained sequelae that persist beyond 3 to 6 months, are difficult to diagnose and manage, and require specific multidisciplinary care; such as postural orthostatic tachycardia syndrome, fibromyalgia syndrome, and post infectious fatigue syndrome.
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Knowing the way Lloyd and the government here operate, some see this as a way to dismiss and trivialise these illnesses as MUS.
 
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Art Vandelay said:
The Australian government committed $50 million to research Long Covid. They've set up an expert panel to advise "on research investments under the Medical Research Future Fund (MRFF) to improve outcomes for people experiencing Post-Acute Sequelae of COVID-19 (PASC). PASC is also known as Long COVID."

Post-Acute Sequelae of COVID-19 (PASC) Research Plan Expert Advisory Panel

Of course, Andrew Lloyd has managed to get himself appointed to the panel. Note that he claims to have 'nil' declarations of interest.
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The composition of that panel is utterly horrifying.
There is supposed to be at least one consumer representative. As far as I can see, there is only one out of the nine:
Dr Elizabeth Deveny is Chief Executive Officer of the Consumers Health Forum of Australia.
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She therefore presumably has no specific experience of post-viral conditions. From my experience on a funding panel, consumer representatives who are not familiar with the politics and people associated with these conditions are worse than useless.

I think the Australian ME/CFS organisations (and the Long Covid ones) should be protesting this in the strongest possible terms. This is definitely a stich up.

Knowing the way Lloyd and the government here operate, some see this as a way to dismiss and trivialise these illnesses as MUS.
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It's hard to see this in any other way.
 
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Just on this a bit further because I'm so astounded that this has happened. $50 million in funding for Long Covid research and it appears that BPS proponents like Lloyd and the RACGP have unfettered control of its allocation. It's a disaster waiting to happen.

Can an organisation start a petition? This is an opportunity for ME/CFS organisations to reach out to the Long Covid ones and advocate the hell out of this.

The funding of the Australian replication of the Dutch Recover trial for Long Covid seems assured with this news. It's really important that the NHMRC is contacted about the flaws in the Dutch study (which they partly funded).
 
Hutan said:
Just on this a bit further because I'm so astounded that this has happened. $50 million in funding for Long Covid research and it appears that BPS proponents like Lloyd and the RACGP have unfettered control of its allocation. It's a disaster waiting to happen.

Can an organisation start a petition? This is an opportunity for ME/CFS organisations to reach out to the Long Covid ones and advocate the hell out of this.

The funding of the Australian replication of the Dutch Recover trial for Long Covid seems assured with this news. It's really important that the NHMRC is contacted about the flaws in the Dutch study (which they partly funded).
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The BPS group seems to be watching funding operations like a hawk. Managed to insert themselves in the Netherlands, now in Australia. No doubt planning similar in Scandinavia should opportunities arise. And then there was Crawley who managed to become a leading figure in British research. I think a more concerted effort from patients around the globe is necessary, not just between different patient groups like those with ME & LC.

They've organized internationally in a couple of bodies and seem to be leveraging the full weight of their group to get things funded, we should do likewise if we want to stop this. The 50 million dollars from Australia and 28.5 million euro's from NL could do a lot of good when properly used.
 
rvallee said:
The plan is published.


MRFF Post-Acute Sequelae of COVID-19 Research Plan
https://www.health.gov.au/resources...equelae-of-covid-19-research-plan?language=en

This plan supports research investments under the Medical Research Future Fund (MRFF) to improve outcomes for people experiencing Post-Acute Sequelae of COVID-19 (PASC). PASC is also known as long COVID.
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On page 8:

Topic B: build knowledge of key factors that impact PASC prognosis, including but not limited to psychosocial, physical and behavioural contributors
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Sean said:
Afraid our government (the current Labor one, and the previous three conservative ones), are very keen on the behavioural nudging strategy being used in the UK and US (and no doubt elsewhere).

Behavioural science quietly shaped Robodebt's most devilish details — and their work in government continues - ABC News
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With all the talk about cross-sectional learning etc, can't these people learn that nudging people to be more healthy through campaigns and similar in general has not be shown to work? How many eat "five a day"?
 
Midnattsol said:
With all the talk about cross-sectional learning etc, can't these people learn that nudging people to be more healthy through campaigns and similar in general has not be shown to work? How many eat "five a day"?
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As long as this industry keeps making money they won't stop. It's careers now, huge income for zero effort work. It's held out long enough that it's very clear that results are entirely irrelevant. It's all about image, about pretending to be doing something.
 
The review of the NICE guidelines got some media attention here, in an online medical rag. It’s predictably bad. (Apologies if this has already been posted elsewhere!)

Anger over exercise advice in chronic fatigue syndrome

A group of Australian and international clinicians have been met with backlash after they critiqued the latest NICE advice against exercise and cognitive-behavioural therapy for patients with chronic fatigue syndrome.”
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Professor Glasziou and colleagues said they were concerned the new advice would “effectively deny clinicians the ability to offer graded exercise therapy and evidence-based cognitive-behavioural therapy to those patients who want them, and risks perpetuating chronic ill health and disability”.
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A key question in the review was why the guidelines were updated in the first place, with authors citing an internal NICE review from 2017 that concluded “there was no new evidence to justify a revision of the previous guideline”.

“A substantial change to the previous recommendations would be understandable if the balance of the evidence had fundamentally changed,” Professor Glasziou and colleagues wrote.

“While some reviews [published since the release of the 2007 guidelines] mentioned limitations in the evidence, every review concluded cognitive-behavioural therapy and graded exercise therapy improved fatigue and other outcomes.”
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https://www.medicalrepublic.com.au/aussie-gp-slammed-for-critique-of-chronic-fatigue-syndrome-guidelines/96284
 
Yes, it is awful. Glasziou should be ashamed of himself for playing the victim of social media comments he didn’t like. And for talking rubbish. I have never heard any defenders of the CBT/GET approach explaining how patients are supposed to make informed choices about whether to do CBT/GET given that nobody knows who might be one of the lucky few who survive the treatment without getting sicker, let alone actually being cured.
 
Trish said:
I have never heard any defenders of the CBT/GET approach explaining how patients are supposed to make informed choices about whether to do CBT/GET given that nobody knows who might be one of the lucky few who survive the treatment without getting sicker, let alone actually being cured.
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Not to mention the fact that they still refuse to acknowledge any possible risk of harm.
 
MRFF Post-Acute Sequelae of COVID-19 Research Plan
https://www.health.gov.au/resources...equelae-of-covid-19-research-plan?language=en

This plan supports research investments under the Medical Research Future Fund (MRFF) to improve outcomes for people experiencing Post-Acute Sequelae of COVID-19 (PASC). PASC is also known as long COVID.
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Consumer webinar on the PASC (Long Covid-19) Research Plan

Consumer webinar on the PASC (Long Covid-19) Research Plan

Consumers Health Forum will be co-hosting a webinar for consumers on the MRFF Post-Acute Sequelae of COVID-19 (PASC) Research Plan.

In this webinar, CHF CEO, Elizabeth Deveny who is on the Expert Advisory Committee for the Research Plan and Dr Masha Somi, CEO for the Health and Medical Research Office at the Department of Health and Aged Care will lead the discussion.

Wed 6 Sept 2.00-4.30pm (AEST)

Registration details to be announced.

Email communications@chf.org.au(link sends e-mail) if you want to be notified when the registration details are rerleased.
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