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Any figures for funding of ME research in the UK?

Discussion in 'Action Alerts and Advocacy' started by Bob, Feb 7, 2010.

  1. Bob

    Bob

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    Hi everyone,

    I'm writing some letters to the UK government regarding the MRC and the lack of biomedical funding for ME.
    And I'm after some figures for health funding in the UK...

    Does anyone have any figures for UK spending, per year, for the following?:
    1. MRC funding for biomedical research into ME
    2. MRC funding for non-biomedical research into ME
    3. Total public sector funding for all types of research for ME.
    4. Total public sector funding for research into Cancer
    5. Total public sector funding for HIV research

    Or I'd be happy with any related figures that anyone can provide.

    Thanks very much for any assistance with this,
    Bob
     
  2. Trooper

    Trooper Senior Member

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    Hi Bob

    I can see where you are going with this. Good stuff.

    I don't have data that you are looking for but good luck with collecting it all.

    I think I am going to go at it via a slightly different angle - trying to find out how many people have ME/CFS in the UK, how much is spent in benefits then hopefully contrast this figure (if it's even possible to get) with the amount of money spent on funding research. Hopefully then highlighting how far the WPI has got with their private resources and the relatively short time frame in making such a striking breakthrough. I think it may provide a compelling argument. Money talks right?

    So I would be interested in any breakdown figures you get for the total public spending on all research into ME/CFS.

    If anyone is reading this and knows it has been done before, please can you let us know :) no point in re-inventing the wheel :)
     
  3. Adam

    Adam *****

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    Hi Bob

    The MRC site lists all current research projects - and their costs.

    http://www.mrc.ac.uk/ResearchPortfolio/index.htm

    At present there are only a couple of ongoing projects related to CFS (that is what you will need to type into their search engine to get any results). One is about ethnicity and cultural influences? The other is about drinking chocolate!! That is apart from the biggy: Peter White's PACE trial, looking into the efficacy of CBT versus GET versus APT (adaptive Pacing therapy) - the patient choice, so to speak. So the CFS side of your research won't take very long.

    good luck

    Adam
     
  4. Adam

    Adam *****

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    Hi Trooper

    You might add to your list of things to find out:

    the likely cost of anti-viral meds in relation to say the cost of state benefits. Is it cheaper for the State to pay me to be ill or make me well again.

    Anyone any ideas what it costs on average for an HIV sufferer to recieve medication?
     
  5. Bob

    Bob

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    Thanks Adam - i'll have a look at their website. A study on 'Cultural influences'? That's going to be useful for finding a biomedical cure isn't it?!
    I've read that the PACE trial uses the London Criteria to select patients - a very loose diagnostic criteria that allows psychiatric patients to be included in the study - so that makes it really relevent for us doesn't it!
    My letters are getting longer all the time with all of this info i'm gathering!

    Trooper - i'll let you know if i get any figures, but i'm finding it difficult to find any info on this. I did get a figure on cancer funding from the BBC website, but it looks smaller than i expected, and i don't know what sources of funding they are including in their figures.
    I like your angle that you are taking - it's intelligent and creative - good luck with that.
    I'll let you know how i get on.
     
  6. Dolphin

    Dolphin Senior Member

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    AfME 2003 Cost to the coutry report

    (I have this as a pdf which I can send anyone who PMs me their E-mail address- or maybe that won't be necessary as I've tried to attach it)
     

    Attached Files:

  7. Dolphin

    Dolphin Senior Member

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    I can't see the drinking chocolate one. The three I see are all at: Queen Mary, University of London. Although it is not clear, Peter White is involved in all of them.
     
  8. Dolphin

    Dolphin Senior Member

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    MRC CFS/ME research funded since 1993/1994

    (From a Co-Cure post of mine from June 2008)

    http://listserv.nodak.edu/cgi-bin/w...3&X=39E2991D4EDF6538D0&Y=tomkindlon@gmail.com

     
  9. Trooper

    Trooper Senior Member

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    Cheers for posting this Tom.. You just saved me a load of energy that I don't have!!

    I don't suppose you know where, when and how the figure of 150,000 to 250,000 estimated cases of ME/CFS came from?

    Thanks again :)
     
  10. Sasha

    Sasha Fine, thank you

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    Hi Bob - it's a while since I've read this but MERUK has at least some of this info in publications listed on this page - they make a good argument!
     
  11. Bob

    Bob

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    Hi tomk and Sasha,
    amazing stuff... thanks very much to both of you... that's a great help...
    i'll start sifting though it now,
    Bob
     
  12. Dolphin

    Dolphin Senior Member

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    I think their sources are the following two studies (below) from the US.
    These studies involved tens of thousands of phone numbers being rung at random.
    Questions were asked about a person in the household (I think whoever had the nearest birthday - basically not just the person who answered the phone).
    If they thought the person sounded like they might have CFS, they were invited in for further testing and questioning.

    They found prevalence figures of 0.235% (i.e. 235 per 100,000) and 0.422% (422 per 100,000). If you multiple those figures up by the population of the UK, you get approx 150,000 and 250,000.

    Studies like that are very, very expensive and haven't been done in the UK at least on a large scale.

    Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

    Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.
     
  13. Trooper

    Trooper Senior Member

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    Wow, that sounds rather like a rather vague way of gathering data, but hey ho.

    Thanks again Tom :)
     
  14. jace

    jace Off the fence

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    On Wednesday Feb. 3 there was a soundbite all over the BBC news programs, that for each cancer sufferer in the UK 300 was spent on research, whereas dementia research only gets 60. This sent me scuttling to the MRC website, where I found that for ME/CFS 3.5 million approx was spent, none of it on biomedical studies. So 300 plays 60 plays 14. I sent a few emails that day, didn't get picked up that I noticed, but hey, every little helps.

    The only way to estimate the number of sufferers of a disease that is so little understood is to extrapolate the percentage found in a sample by multiplying it with the total population. I didn't like it either, then I realised there was no other way to do it unless you are going to examine every human being in the country.
     
  15. Bob

    Bob

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    Thanks Jace, great stuff... that's very useful... and interesting! (i'll try to use that info in my letters)
    and i agree... every little helps... that's my philosophy...
    we can't expect to change the world with one letter,
    but if we all keep on bashing them with emails and letters, then they might get the message one day!
    That's my approach anyway.
    Thanks again,
    Bob
     
  16. Min

    Min Senior Member

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    We are just going to have to fund our own biomedical research via the tiny charities that do it.

    Donations to ME Research UK can be made through the Just Four Quid campaign:

    http://justfourquid.com/about/

    the CFS Research Foundation also funds biomedical research:

    http://www.cfsrf.com/

    & the WPI takes Paypal, which is handy for those of us outside the US:

    http://www.wpinstitute.org/
     
  17. Dolphin

    Dolphin Senior Member

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    I agree that that's one sure way to get results.

    Lots of people have done lots of letter-writing over the years. Good luck to anybody who does it but I dont think we can depend on it.

    People can do both methods of course (Ive complained about the MRC in various ways over the years but have also donated and been involved in fundraising for research - thought it was relevant to mention).
     
  18. Bob

    Bob

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    I found this posted by Marco on another thread...
    http://forums.phoenixrising.me/index.php?threads/xmrv-cfs-uk-study-ii.2361/page-7#post-56347

    It's a Written Parliamentary Question published in Hansard on 7 December 2009...
    with useful info about MRC funding for ME:

    Written answers for 7 Dec 2009 :
    Column 46W

    Biomedical Research

    Paul Rowen: To ask the Minister of State, Department for Business, Innovation and Skills what biomedical research into myalgic encephalomyelitis and xenotropic murine leukaemia virus-related virus is being undertaken. [304330]
    Mr. Lammy: The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.

    In 2008-09 the MRC's total expenditure for research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) amounted to 728,000. This supported four projects including a 164,000 research programme led by Dr. C Clark at Queen Mary College, London on the general and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes. CFS/ME continues to be a strategic priority area for funding and the MRC remains committed to supporting scientific research into all aspects of CFS/ME including evaluations of treatments and studies into the biological basis of the condition.

    The MRC recently held a CFS/ME research workshop where the recent xenotropic murine leukaemia virus-related virus (XMRV) findings were among the items discussed. A note of the discussions will be published on the MRC website in due course.

    The MRC's National Institute for Medical Research are leading a programme on infection and replication of retroviruses (including XMRV). One study within the programme is looking at how XMRV reproduces in the cell, its interaction with host cell factors and how it subverts the host immune systems.


     
    Last edited: May 18, 2014

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