Australia - Mason Foundation to investigate viability of ME/CFS Biobank - update - funding awarded for biobank

Sly Saint

Sly Saint

Senior Member (Voting Rights)
"
Mason Foundation ME CFS Biobank Survey

The Mason Foundation is a charitable trust that supports medical and scientific research on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The Mason Foundation has engaged the Nous Group (Nous) to investigate the viability of establishing an ME/CFS biobank in Australia. The purpose of this project is to assist the Mason Foundation to make a decision on whether it should fund the establishment of a ME/CFS biobank. If the Mason Foundation does decide to fund a biobank, it would continue to contribute some funds towards its existing ME/CFS research grants program.

Nous is conducting a short survey of researchers to inform the assessment of potential demand for an ME/CFS biobank in Australia.

As a member of the Australian Neuroscience Society, we would be grateful if you could respond to this short survey via this link.

Please also feel free to forward this survey to other researchers you know that are working in ME/CFS or related fields.

The survey takes 5-10 minutes to complete. Please complete at your earliest convenience. Responses are confidential and Nous will not attribute any responses to individuals.

If you have any questions about the project, please contact Holly Norrie (Nous Group) at Holly.Norrie@nousgroup.com.au or on (02) 8281 8054."

http://www.ans.org.au/resources/upcoming-conferences-and-courses
 
Sly Saint said:
If the Mason Foundation does decide to fund a biobank, it would continue to contribute some funds towards its existing ME/CFS research grants program.
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This bit sounds kind of concerning to be honest. It seems to be saying that a biobank would replace research funding, which I'm not sure is that good a thing, unless there is funded research that can't go ahead due to lack of samples. Anybody know how much research funding the Mason Foundation normally gives out, and how that compares to total Australian funding?
 
Hutan said:
In my opinion, a biobank is a not necessarily a bad move.
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Well, no, I'm not saying a biobank is necessarily a bad move but a biobank instead of research funding? There could be an argument for that but I'm not aware of any Aussie ME/CFS researchers bemoaning the fact that they can't get enough samples for their research. From our Q&A with the UK Biobank I know the potential savings from using a biobanks samples can be significant but if the samples are sat in the biobank because there isn't any funding for research then that seems pretty pointless to me.
 
Andy said:
This bit sounds kind of concerning to be honest. It seems to be saying that a biobank would replace research funding, which I'm not sure is that good a thing, unless there is funded research that can't go ahead due to lack of samples. Anybody know how much research funding the Mason Foundation normally gives out, and how that compares to total Australian funding?
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It’s a huge concern. Yes, I do know how much Mason funds, but it’s not public information, so I can’t share it. NHMRC currently funds approximately $110K/year. Mason is our largest source of funding. In recent years, that has gone to a fellowship grant to Andrew Lloyd. This could mean we end up with less funding for research than we have now.
 
Andy said:
Well, no, I'm not saying a biobank is necessarily a bad move but a biobank instead of research funding? There could be an argument for that but I'm not aware of any Aussie ME/CFS researchers bemoaning the fact that they can't get enough samples for their research. From our Q&A with the UK Biobank I know the potential savings from using a biobanks samples can be significant but if the samples are sat in the biobank because there isn't any funding for research then that seems pretty pointless to me.
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Wee need to increase our funding of studies, not switch to funding a biobank instead. The biggest obstacle our researchers face isn’t getting access to samples, it’s funding. Reducing funding for research in order to fund a biobank won’t help many, because there won’t be funds to study the samples.
 
Well, I believe the Mason Foundation funded a study of online training of medical professionals on ME/CFS organised by Lloyd - so presumably it had a BPS slant.
ETA:
https://www.s4me.info/threads/rct-o...me-protocol-2017-lloyd-barry.2350/#post-42659

And a study of Wii fit or video gaming with movement to cure people with ME/CFS.

I may not have the details right, but that's the gist. A biobank or those two studies - I'd take the biobank any day. Nothing or those two studies - nothing is still better.

Of course, maybe the Mason Foundation funds useful studies too.
 
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Hutan said:
Well, I believe the Mason Foundation funded a study of online training of medical professionals on ME/CFS organised by Lloyd - so presumably it had a BPS slant.

And a study of Wii fit or video gaming with movement to cure people with ME/CFS.

I may not have the details right, but that's the gist. A biobank or those two studies - I'd take the biobank any day. Nothing or those two studies - nothing is still better.

Of course, maybe the Mason Foundation funds useful studies too.
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Mason has funded some questionable studies, that’s true. They’re also the primary source of funding for all our biomedical research, including for people like Chris Armstrong and Neil McGregor. Chris has told me that he won’t use a biobank, so a reduction in funding would be detrimental to their work. We are better off trying to educate Mason and shift them towards only funding biomedical research, than having them shift a chunk of the bucket of money off in another direction. This would be a disaster.
 
https://meaustralia.net/2017/01/18/...tition-to-stop-graded-exercise-therapy-trial/

Jan 2017

“We are deeply concerned that your trial, UN1111-1180-1073, “investigating the efficacy of online continuing education for health professionals to improve the management of chronic fatigue syndrome (CFS)” is based on poor science and is likely to cause harm to patients. We ask the University of NSW to cease this study immediately and the Mason Foundation to withdraw funding and to cease funding trials using graded exercise therapy for chronic fatigue syndrome.”

From the Mason Foundation:
Thank you for your email expressing concerns about the Judith Jane Mason and Harold Stannett Williams Memorial Foundation’s (“Mason Foundation”) involvement in medical scientific research.

As trustee our duty is to act impartially between beneficiaries and in order to do so we utilise and respect the advice of experts in the arena of medical and scientific research. The Mason Foundation makes use of a specially convened panel of scientists from a range of prominent medical institutions to provide advice on the quality and value of the scientific research proposal.​


Simone said:
We are better off trying to educate Mason and shift them towards only funding biomedical research, than having them shift a chunk of the bucket of money off in another direction.
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Fair enough. Best wishes with educating them. I wonder who proposed the biobank to them.
 
Hutan said:
Fair enough. Best wishes with educating them. I wonder who proposed the biobank to them.
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Maybe NCNED? The only researchers in Aus flushed with cash...

Would seem a bit unfair for other biomed researchers keen to get funding for work who can already access cohorts.

It is possible to access the UK biobank already anyway I think. Its set up and well characterised and NIH supported.
 
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Bit of a catch 22 if biobank funding leads to a reduction in the already tiny funding for ME research in Australia. Those hoping to use a potential biobank would need to build the cost recovery of biobank use into their grant applications. But there wouldn't be much grant money for them to apply for, in order to access the biobank!
This little snippet of information is not built into the survey that is inviting researchers to say that they would use a biobank if it existed.
 
I saw that the Mason Foundation has two causes - Alzheimers and ME. And they are giving $600,000 a year to one Alzheimers cause, maybe more in total.

So, if the trustees could be helped to understand that they have the opportunity to do something really significant with ME, and that there are very few funders in the field, maybe there is enough money to start a biobank and fund useful research. Hopefully the trustees will get good advice on the costs of running a useful biobank before making a decision.

To me, the biggest question is 'who are the trustees getting advice from?'. The foundation's recent choices suggest that there has been problem.
 
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