David Tuller - Trial By Error: Australia’s Online GET/CBT Education Program

Andy

Andy

Senior Member (Voting rights)
Last year, BMJ Open published a paper called “Randomised controlled trial of online continuing education for health professionals to improve the management of chronic fatigue syndrome: a study protocol.” The seven authors, all affiliated with the University of New South Wales in Sydney, included Professor Andrew Lloyd, the infectious disease expert and the country’s leading proponent for the GET/CBT rehabilitative approach to the illness he prefers to call CFS.

Professor Lloyd was the second-to-last author, not the first or senior (and corresponding) author. But the online continuing education program described in the protocol reflects the approach he has pioneered at his Sydney fatigue clinic. This online program is designed for allied health professionals—physiotherapists, exercise physiologists, psychologists, and others outside the domains of medicine. The program promotes graded exercise therapy and cognitive behavior therapy as “evidence-based” treatments for the illness.
Click to expand...
http://www.virology.ws/2018/05/14/trial-by-error-australias-online-get-cbt-education-program/
 
A good, clear article from David, as usual.

This NSW study was funded by the Mason Foundation. The Mason Foundation was set up by a woman who suffered from ME/CFS and supports research into ME/CFS and Alzheimers disease.

From the website:
'Judith Mason had the foresight to appoint Equity Trustees as the sole trustee of her Foundation during her lifetime and by doing this was able to actively shape her legacy and ensure her trustee understood well her philanthropic intent. This has enabled a seamless transition in managing the Mason Foundation following Judith Mason’s death in November 2013.'

I believe that since 2013 it appears that the bulk of the funding has gone to support Alzheimers disease. The funding that has gone to ME/CFS seems to have supported research consistent with a belief that behavioural correction is what is needed. There was the South Australian Wii study (getting people with CFS to move by making movement fun), this Lloyd team study and a woefully underpowered study that investigated sleep and anxiety in children with CFS.

I think some investigation into who is making funding allocation decisions (and who is advising them) in the Mason Foundation is warranted. They seem to be doing more harm than good.
 
dave30th said:
Well the Mason Foundation also funds the biomedical folks at Griffith and Melbourne. So they fund research in a lot of different avenues.
Click to expand...

The Marshall-Gradisnik/Staines team got a big 4-year commitment of funding from the foundation in 2011 when the trustee was ANZ, not Equity. If the foundation is continuing to primarily fund medical research, that's great. I haven't been able to find annual lists of funding allocations for the Foundation.

It's hard to see how trustees that fully understand the politics and history of thinking about ME/CFS could think that these behavioural focused studies are priorities though.
 
http://www.eqt.com.au/charities-and-not-for-profits/grants/medical-research-and-health

"The goal of The Mason Foundation is to achieve enduring, positive impact in the areas of Chronic Fatigue Syndrome and Alzheimer’s disease through funding medical research principally into the causes, prevention and/or management of these diseases.

The Judith Jane Mason & Harold Stannett Williams Memorial Foundation was established as a result of a generous donation in 2003 from Judith Jane Mason (nee Williams). She also made a number of top-up contributions during her lifetime. The Foundation is named in honour of the benefactor and her father, Harold Stannett Williams, who Ms Mason described as “a most intelligent, wonderful and charitable man”.

As part of this year’s grant round, The Mason Foundation is pleased to partner with the National Foundation for Medical Research and Innovation (NFMRI). Together, we will be seeking expressions of interests for projects investigating potential treatments and/or cure for Alzheimer’s Disease using NFMRI’s three innovation portfolios. Further information is provided here

Applications Open: 4 April 2018
Applications Close: 31 May 2018

More information, including forms, will be available on NRMRI's website

The Foundation is mot[sic] currently seeking new applications for Chronic Fatigue Syndrome research."
​
Maybe the foundation isn't seeking new applications for CFS research here because it has made big multi-year commitments in past years, or it is saving funds for the biobank that has been talked about? I just think, as probably the major private funder of ME/CFS research in Australia, it would be good to know what the Mason Foundation's funding strategy is and who their advisors are.
 
Last edited:
In previous years, calls for applications for research by the Mason Foundation included the facts that Judith Mason had herself suffered from Chronic Fatigue Syndrome and that she had managed an inheritance astutely to grow it to provide the funds for the foundation, [edited to correct an error]. 2017's Call for Applications made no mention of any of that, even though detail was given about Judith's father being a wonderful, charitable man.

That 2017 Call for Applications also seems to widen the interpretation of what biomedical research might be acceptable,, including research into 'fatigue' and other disorders. This is of course reasonable, but only provided the people analysing the applications are very well-informed.

It is understood that the sciences related to inflammation, cognition and neurosciences, all have a role to play in advancing our knowledge and understanding of Chronic Fatigue Syndrome (CFS). Therefore, in seeking to achieve the Mason Foundation’s goal with respect to CFS, the Trustees recognise that support for research that is not directly targeted at people suffering from CFS, may provide new insights into mechanism and treatments for this condition. Applications looking at fatigue and chronic neurological and inflammatory disorders would be welcomed.
Click to expand...

I'm considerably reassured that people like Chris Armstrong seem to be communicating with the Foundation Trustees. But not completely reassured.
 
Last edited:
Hutan said:
A good, clear article from David, as usual.

This NSW study was funded by the Mason Foundation. The Mason Foundation was set up by a woman who suffered from ME/CFS and supports research into ME/CFS and Alzheimers disease.

From the website:
'Judith Mason had the foresight to appoint Equity Trustees as the sole trustee of her Foundation during her lifetime and by doing this was able to actively shape her legacy and ensure her trustee understood well her philanthropic intent. This has enabled a seamless transition in managing the Mason Foundation following Judith Mason’s death in November 2013.'

I believe that since 2013 it appears that the bulk of the funding has gone to support Alzheimers disease. The funding that has gone to ME/CFS seems to have supported research consistent with a belief that behavioural correction is what is needed. There was the South Australian Wii study (getting people with CFS to move by making movement fun), this Lloyd team study and a woefully underpowered study that investigated sleep and anxiety in children with CFS.

I think some investigation into who is making funding allocation decisions (and who is advising them) in the Mason Foundation is warranted. They seem to be doing more harm than good.
Click to expand...
Perhaps fodder for David's next article?
 
You must log in or register to reply here.
Back
Top Bottom