Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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MRC funding for ME research in year 2009/10 - Only 109,000?

Discussion in 'Action Alerts and Advocacy' started by Bob, Nov 22, 2010.

  1. Bob

    Bob

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    The UK government has given answers in parliament that MRC funding for ME research in the year 2009/10 was only 100,000 or 109,000.

    This seems like a very small figure... I was wondering if it is a mistake or if it is accurate... Does anyone have any further info on it?

    It's also interesting to note that the UK government has not commissioned any research on the relationship between XMRV and ME (see the highlighted text, above.)
     
  2. Bob

    Bob

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    Also,
    Does anyone know if the written answer will be automatically published on some sort of parliamentary website, or would I have write to Lord Skelmersdale to find out what the answer is?
     
  3. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Excellent question/distinction by Lord Skelmersdale - finally, someone asked an intelligent question about biological (biomedical) research specifically, to get to the bottom of the matter.

    I expect we'll find out that figure was for the PACE trial (illness 'managment') or some version thereof - unless it was for the 1st ever MRC funded biomedical (negative XMRV) study by Bishop/Kerr et al.

    I'm not sure where you might find the answer Bob, might be worth writing to Lord Skelmersdale.

    Thanks for posting.
     
  4. Bob

    Bob

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    Have written to Lord Skelmersdale... will keep the forum updated with any replies.
     
  5. Min

    Min Guest

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    thanks Bob
     
  6. ukxmrv

    ukxmrv Senior Member

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    Thanks Bob, to get previous years figures we have had to put in FOI requests. Hope they have an answer for us. Good luck and thanks!
     
  7. Enid

    Enid Senior Member

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    And who can move the MRC - blinkered as yet.
     
  8. ukxmrv

    ukxmrv Senior Member

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    Bob, not sure if you have had a reply yet? The Countess of Mar has sent this

    Prof White et al – the PACE trial - 73, 405

    Dr Clark – General and specific risk markers & preventative factors for chronic fatigue and irritable bowel syndromes 42,698

    Dr a Weardon – Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (FINE) - 6982 (this figure related to a reconcilement payment at the end of the tenure of this grant).
     
  9. Bob

    Bob

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    I got a reply from Lord Skelmersdale today...

    The written answer from the Department of Health is as follows:


    In summary, the MRC's funding for ME/CFS, for the year 2009-10, is as follows:

    Grants given:
    73,405 (Professor P White et al - The PACE trial)
    42,698 (Dr C Clark)​

    Total grants given: 116,103

    Funds returned: -6,892

    Total MRC funding figure for 2009/10 = 109,211 (This corresponds to the figure given in answers in parliament of 109,000)
     
  10. Bob

    Bob

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    Thanks ukxmrv... It looks like they are sharing information with each other...

    Note that the 6982 figure is a negative figure, for funds returned to the MRC.
     
  11. Bob

    Bob

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    I think that these figures mean that there was zero funding for biomedical research for ME/CFS for 2009/10.

    The 'Dr C Clark' study looks like it is not laboratory biomedical research, but rather a case of sifting through medical records.

    I find it hard to understand why the funding for ME could have been at such a pathetic, almost non-existent funding figure, with zero funding for biomedical research. It's scandalous.

    I wonder if there are any other similar neurological diseases, such as MS, which received zero funding for biomedical research. And I wonder what the funding figure was for MS for the same year.
     
  12. Enid

    Enid Senior Member

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    Thanks for the info Bob. Long hard battle for the Countess of Mar over so many years now. Just feel the MRC are all over the place with PACE funding. At least IBS (viral) has collected something. And nurse led self help - how can that help when the real thing is so misunderstood (as yet).
     
  13. wdb

    wdb Senior Member

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    Do we know whether this is because the MRC is denying CFS research funding or whether there are just not many UK doctors interested in CFS research and so not many grant applications have been made ?
     
  14. Bob

    Bob

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    The MRC says it is due to a lack of quality research applications, but Jonathan Kerr has demonstrated that his grant applications were effectively blocked by psychiatrist referee/referees on the MRC's grant giving panel.
    Kerr said that he typically received scores of 9,8,3 for his applications where the '3' was from a psychiatrist which had the effect of blocking the application.
    I believe that researchers are driven out of the field by a lack of funding. Jonathan Kerr certainly was.
     
  15. Enid

    Enid Senior Member

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    Not many Doctors at all interested here yet. Too much baggage from the psychos. But Science (mostly US) should (and does blood ban) open their eyes to this real illness. Just seen blockage of Jonathan Kerr which simply confirms the worst in the cronyism here in Medicine.
     

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