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: Knowing the way Lloyd and the government here operate, some see this as a way to dismiss and trivialise these illnesses as MUS.
Report on Parliamentary Friends For ME/CFS https://www.emerge.org.au/news/parliamentary-friends-for-me-cfs/
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: 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. It's hard to see this in any other way.
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).
As an Aussie, I'm horrified but not surprised that Andrew Lloyd has his fingerprints on this. The peak bodies Emerge Australia & ME/CFS Australia will no doubt be raising concerns with government.
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.
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.
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
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"?
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.
A key to a ‘faulty’ lock: Why Aussie researchers are excited about naltrexone for CFS Immunologist Professor Sonya Marshall-Gradisnik believes the opioid antagonist could be a viable intervention for affected patients. Rachel Fieldhouse https://www.ausdoc.com.au/news/a-ke...archers-are-excited-about-naltrexone-for-cfs/
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!) 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.
ME/CFS South Australia Event on 26 August, 2023 Seminar: Dr Kiran Thapaliya and Ms Breanna Weigeland of NCNED Topic: An update on the work at NCNED on ME/CFS and Long COVID, including recent systematic reviews and neuroimaging. https://mecfssa.org.au/event/seminar-dr-kiran-thapaliya-and-ms-breanna-weigeland-of-ncned
