1. Guest, click here, to read the 'News In Brief' post for w/c 15th October.
    Dismiss Notice

Australia - Mason Foundation to investigate viability of ME/CFS Biobank

Discussion in 'General ME/CFS News' started by Sly Saint, Apr 12, 2018.

Tags:
  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    1,851
    Likes Received:
    15,294
    "
    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
     
    Inara, AndyPandy, Dolphin and 13 others like this.
  2. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    142
    Likes Received:
    1,520
    Location:
    Australia
    Can I ask how you came by this info, @Sly Saint?
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    1,851
    Likes Received:
    15,294
    errm? on the internet(?)
     
    Invisible Woman and Simon M like this.
  4. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    142
    Likes Received:
    1,520
    Location:
    Australia
    Sorry, brainfogged. Didn’t see the link!
     
    Invisible Woman likes this.
  5. Andy

    Andy Committee Member

    Messages:
    3,861
    Likes Received:
    29,024
    Location:
    Hampshire, UK
    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?
     
  6. Hutan

    Hutan Moderator Staff Member

    Messages:
    2,380
    Likes Received:
    10,307
    I think the Mason Foundation has made some odd choices with research funding. In my opinion, a biobank is a not necessarily a bad move.
     
    adambeyoncelowe, Inara, BurnA and 2 others like this.
  7. Andy

    Andy Committee Member

    Messages:
    3,861
    Likes Received:
    29,024
    Location:
    Hampshire, UK
    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.
     
  8. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    142
    Likes Received:
    1,520
    Location:
    Australia
    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.
     
  9. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    142
    Likes Received:
    1,520
    Location:
    Australia
    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.
     
  10. Hutan

    Hutan Moderator Staff Member

    Messages:
    2,380
    Likes Received:
    10,307
    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.
     
    Last edited: Apr 12, 2018
  11. Simone

    Simone Senior Member (Voting Rights)

    Messages:
    142
    Likes Received:
    1,520
    Location:
    Australia
    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.
     
  12. Hutan

    Hutan Moderator Staff Member

    Messages:
    2,380
    Likes Received:
    10,307
    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.​


    Fair enough. Best wishes with educating them. I wonder who proposed the biobank to them.
     
  13. Aimossy

    Aimossy Established Member (Voting Rights)

    Messages:
    32
    Likes Received:
    317
    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.
     
    Last edited: Apr 12, 2018
  14. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Messages:
    430
    Likes Received:
    2,699
    Seems to be a bit of a chicken vs egg thing with not enough local demand for a biobank vs researchers becoming more interested in doing research in the field due to access to a biobank...
     
    adambeyoncelowe, Hutan and Dolphin like this.
  15. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    200
    Likes Received:
    1,372
    Location:
    Tasmania
    I spoke to a neuroscientist at the University of Tasmania after David Tuller's talk there who is planning research that would utilise this biobank if it gets off the ground.
     
    Indigophoton, Trish, Solstice and 5 others like this.
  16. Andy

    Andy Committee Member

    Messages:
    3,861
    Likes Received:
    29,024
    Location:
    Hampshire, UK
    Did they say who would fund their research?
     
    Aimossy, adambeyoncelowe and Simone like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    7,197
    Likes Received:
    42,184
    Location:
    UK
    I hope, if they do decide to fund a biobank, whoever sets it up consults the UK ME Biobank on appropriate methodology.
     
    adambeyoncelowe and Hutan like this.
  18. BruceInOz

    BruceInOz Senior Member (Voting Rights)

    Messages:
    200
    Likes Received:
    1,372
    Location:
    Tasmania
    The Mason Foundation.
     
    adambeyoncelowe and Hutan like this.
  19. Penelope McMillan

    Penelope McMillan Established Member

    Messages:
    9
    Likes Received:
    71
    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.
     
  20. Hutan

    Hutan Moderator Staff Member

    Messages:
    2,380
    Likes Received:
    10,307
    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.
     

Share This Page