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Funding of ME/CFS research in the UK

Discussion in 'Advocacy Projects and Campaigns' started by Sly Saint, Feb 21, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    I thought that in response to the Ministers statement at the debate on PACE yesterday that a break down of funding for research between psychological 'treatment' and actual biomedical research would also clearly show how skewed the research into ME is.

    The only figures that have been collated as far as I know was in the report in 2016:
    this is from 2006-2016

    sorry but I have to quote the next para only because it is so sickening

    Anyone have more up to date figures?
    or is there a way these can be worked out?
    obviously more was given to PDW...............and for Esther Crawley, then we have the rest of the 'club'........

    It would be good to have a list (with the actual research projects as well as the authors and cost).

    PS if such figures for the US or across the rest of the world exist (there are some in this report but again only up to 2016 and a lot has happened since then) then it would be good for comparison purposes.

    If they do manage to secure another debate in Parliament it could be useful to have this info.

    eta: just wondering if a similar list of published papers might be helpful?

    Attached Files:

    Last edited: Feb 21, 2018
  2. Adrian

    Adrian Administrator Staff Member

    @Graham looked at the funding figures for his video a while ago
    MEMarge, Daisymay and Sly Saint like this.
  3. Graham

    Graham Senior Member (Voting Rights)

    I have data in the form of spreadsheets and a database that covers from the 90s with reliability, and the 80s with less reliability, up to around 2012. I have extracted all the studies funded by the MRC or NIHR, but not those funded by charities. My summary works on studies rather than authors. In essence, the PACE trial, the FINE trial, the 5 studies funded in 2012 following the arm-twisting by the MPs on the MRC, and a handful of very small psychosocial stuff. NIHR had funded nothing up to their recent decision to fund Crawley. There were also a handful of what I would call investigations, carried out by a specialist, involving no extra specific funding, and seldom ending up with a published report as far as I can tell.

    The spreadsheet was produced by the MRC, put online to download, then, shortly after I contacted them to check my figures and confirm that the spending on ME was so low, it vanished. But I had downloaded it by then. We did start to discuss whether we should keep a copy of it somewhere here, but didn't come to any conclusion.

    The database also vanished from an NIHR website when I checked that they hadn't spent a penny on ME research. That was more mysterious because the university that hosted it hadn't realized it had gone, and had no idea what had happened. It took several months to track it down, but eventually a kind bod in NIHR gave me a link to an Access database, which Bob transformed into a format I could use. It is very big and sluggish, and contains details of what seems like all studies carried out in Europe over that time frame. It's a slow process to sieve through it for ME stuff.
    MEMarge, Indigophoton, Jan and 6 others like this.
  4. Andy

    Andy Committee Member (& Outreach when energy allows)

    Hampshire, UK
  5. CRG

    CRG Senior Member (Voting Rights)

    There is no Government defined figure for ME/CFS research. There are two sources of Government funding for medical research, the Medical Research Council and the National Institute for Health Research - both of these are contributing to the DecodeME study, I can't recall the exact split but the total is £3.2 million. The NIHR is also currently funding three BPS focussed studies 1) Measuring Health in Children with CFS/ME with an award over 30 months of £149,457 2) Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK which is£1,026,403.00 over six years, ending 2022 and 3) Depression in paediatric chronic fatigue syndrome (CFS/ME) at £317,866.00 also over six years ending 2022. NIHR has supported other BPS research in the past, you can search here: https://fundingawards.nihr.ac.uk/search

    The MRC was the major funder of the PACE trial but has not provided significant funds for BPS research since 2011 although there are two studies https://gtr.ukri.org/projects?ref=MR/K020269/1 and https://gtr.ukri.org/projects?ref=MR/M02363X/1 which might not meet approval from PwME. There are links to 2 spread sheets at the bottom of this page https://mrc.ukri.org/funding/scienc...e/our-science-and-contacts-psmb/mrcfs/#expert which list MRC historic funding of ME/CFS linked research.

    Off topic question - how do folks prefer links - I've been using bracket numbers in post text and putting the raw htmls at the bottom of the page, above I've used inline links and raw html in the text - which of these three ways of doing things is the easiest to read ? Poll now at: https://www.s4me.info/threads/links-in-posts.23391/

    Edit to correct link
    Last edited: Nov 17, 2021

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