Discussion in 'General ME/CFS news' started by Andy, May 14, 2018.
As ever, an excellent demolition of a planned trial, this time of an education program for professionals.
@dave30th, will you be able to send this in the form of a letter with lots of signatures to BMJ who published the protocol, and the body that approved it?
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.
Well the Mason Foundation also funds the biomedical folks at Griffith and Melbourne. So they fund research in a lot of different avenues.
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.
So it covers the psychosocial, overhyped and biomedical then as three distinct groups...
"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.
I don't disagree with that. I do think the major Australian groups are in regular discussions with the foundation.
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.
I'm considerably reassured that people like Chris Armstrong seem to be communicating with the Foundation Trustees. But not completely reassured.
Perhaps fodder for David's next article?
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