Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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UK government funding breakdown/comparison

Discussion in 'Action Alerts and Advocacy' started by Cheesus, Aug 26, 2013.

  1. Cheesus

    Cheesus Senior Member

    Hi guys :)

    I am currently drafting a letter to the Shadow Home Secretary the Rt Hon Mrs Yvette Cooper, a former sufferer of CFS/ME, to appeal for increased funding. My hope is that given her insight into the illness she might offer greater sympathy and assist in pushing the agenda (though her support of the ATOS work place assessments throws her views on the condition into question... but I'm going to pretend for the sake of cohesion that she's on the same side we are).

    However, I am having real difficulty discovering actual investment figures into research within the UK. Moreover, I am really keen to look at a breakdown in biomedical research funding in general so we can see the obvious disparities in populations affected vs. portions of funding.

    As I know a lot of you are savvy research types, I thought I would check in to see if anyone had at their fingertips a decent and reliable source of stats?

    Thanks amigos!
    Sasha likes this.
  2. Esther12

    Esther12 Senior Member

  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Against the expert view that about 80% never ever recover from ME. I think that 90% figure is because of those who do recover, about 90% do so in the first five years. This is then misinterpreted.

    There is also the issue that about 90% of those with post viral fatigue recover, again in the first five years, and most in six months.
  4. ukxmrv

    ukxmrv Senior Member

    I met Yvette Cooper when she came to talk to a group. She has also claimed that her symptoms were due to Graves Disease. At the talk I heard she was clear that after being supported to work at home for a year she was well enough to return to work. The way she told it sounded like a post viral illness that cleared but her references to being dx'ed with Grave's Disease around that time confused me.

    She was well aware then of the raw deal patients were getting in the UK. She didn't give the impression of being in the slightest bit interested in helping. If I was a constituent of hers I would be meeting with her but I don't live in her area.

    Wishing you the very best of this and hope she has changed her mind and will do something useful.
    maryb likes this.
  5. Mark

    Mark Acting CEO

    Sofa, UK
    Some good figures for UK research funding would be extremely useful for campaigning I think, but when we've looked for this in the past, I don't recall ever seeing anything reliable. The closest we've got is questions regularly asked in the house of commons about MRC funding. You should be able to find some of those answers via a search of theyworkforyou. However, that only gives the MRC funding and this doesn't cover all state-funded research. I think some research is funded indirectly via institutions (eg where does the funding for Esther Crawley's research come from?) and it can be very laborious to track down all those direct and indirect funding sources. Then there's research funding from the charitable sector. For campaigning purposes, the MRC figures are a good place to start I think, and a look at the year-by-year totals for that is overdue IMO because as I recollect it, the £1.5m was presented as a big new pot of money and in reality there was no money the year before or the year after so it's effectively a considerable cut. Anyway, some good research on these figures would be well worthwhile.
  6. Purple

    Purple Bundle of purpliness

    It would also be interesting to see how much is funded by the charitable sector compared to the state/institutional funding. I guess finding out things like this would be lots of work though for someone with ME.
  7. Sasha

    Sasha Fine, thank you


    Although some research might be funded by institutions such as universities and hence indirectly by govt, I think those funds are used at the discretion of those institutions. I think that looking at direct govt funding is the thing to focus on, if we want to argue that the govt has got its priorities wrong. I think this is a very important area for advocacy.

    According to a paper on MERUK's site that I read a while back, disease researchers get most of their research funding from charities, not govt. I think that's also a bit of a red herring, though, advocacy-wise (though if ME gets comparatively little charity funding, as I'm sure it does, that's another argument for the govt to step up).

    I wonder if MERUK would be good people to ask about this - they may have some info or some ideas about how to find out.

    It's surprising that the MRC doesn't provide annual data on spend per disease as a matter of course. They do indeed work for us.
  8. Cheesus

    Cheesus Senior Member

    Thanks for your responses, guys. You make some really good points and give some excellent advice.

    It is indeed problematical from a number of perspectives that there are no clear stats on medical research funding in the UK. I would have thought there were a demand for such figures. Could a freedom of information request perhaps reveal these figures?

    I might see if MERUK has any decent stuff. However, I feel I'm getting out of my depth a bit now. My concentration levels aren't great, and while I have the capacity to articulate a letter I do not have the capacity to attempt to extrapolate information from other sources. Mental overload :ill:

    I'll consider my options and see which way I want to go with this. I'll probably also write to my local MP, though I've just sent one email bothering him about HS2 so I might wait on that one for a bit :)

    Thanks guys!
    Sasha likes this.

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