The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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UK MRC spend per-patient for other diseases?

Discussion in 'General ME/CFS Discussion' started by olliec, Dec 20, 2012.

  1. olliec


    London, UK
    I'm in correspondence with my MP about ME and the latest letter proudly tells me that there's £1.6m from the MRC going into ME/CFS research, which I know about already. He's making out like it's a lot and I want to explain why it is not.

    Does anyone know where I can find figures for other diseases and a) the number of people in the UK with that disease, and b) how much the MRC put into research for that disease.

    By my calculation the MRC is putting £6.60 per patient into research this year. If the money they put into MS was the same, the MRC would put a total of £560,000 into MS research and I suspect (and obviously hope) it's rather more than that.
  2. Min

    Min Guest

    Some of the £1.6m is going to study Sjögren's syndrome, and not whatever the 'chronic fatigue' is that the MRC is funding studies into instead of funding studies into the neurological illness myalgic encephalomyelitis.
  3. Mark

    Mark Former CEO

    Sofa, UK
    My take on this...

    The year before the £1.6m was announced, MRC funding for ME/CFS fell from the usual average of about £850,000 a year to less than £100,000 for the year before the announcement. Thus the average funding per year remained the same as it has always been. There are parliamentary questions revealing all these funding levels. Unless funding levels of more than £1m per year are maintained, the £1.6m will effectively represent a funding cut, from £850k per year, disguised as a one-off funding pot of £1.6m but with nothing the year before or after that funding pot. That is what I expect, but time will tell - it depends what funding is announced next. I'm not sure on the dates, but from recollection, if another £1m is not announced within the next few months, that would represent a funding cut.

    I think it's telling and outrageous that this £1.6m pot has been presented as if it were a funding increase, because this is completely misleading. However, the nature of the funded projects is a dramatic improvement from what went before, and it effectively represents the first real MRC funding for biomedical (ie not 'psych') research. The Sjogren's research, and other research that doesn't purely address ME/CFS directly, is in my opinion still good and relevant research for us. I don't think the criticisms that I've read of the funded research projects are very reasonable, and I think those complaints are a counter-productive form of advocacy; instead, the issue that should be focused on is that if you average out the funding level year-by-year, this £1.6m pot is just the same level of funding that has been the case for the last 10-20 year, and it is nowhere near enough.

    You are on exactly the right lines, in my opinion, in looking for comparisons of funding levels with other conditions, and the numbers of people affected by them, and if there were such a league table we would be at the very bottom. I think you'd find a ratio of something like 1:50 or 1:100 as compared with the funding levels per patient for the conditions at the top of the table. Reliable and credible comparison data on that question is a vitally important advocacy project for the UK, IMO, and it may need parliamentary questions and a fair bit of honest and rigorous work to determine a fair basis on which to compare the numbers.
    justy and Sasha like this.
  4. Firestormm


    Cornwall England
    Funding is not allocated though on a 'most deserving' basis is it Mark? Or anyone? I'm really not sure how it is allocated. I don't think it is 'fair' to say MS for example get's X and we get Y which is less and that somehow this gives us a greater moral argument.

    I mean if you look at the spend on MND a terminal illness - the funding spend is scandalous.I only know this as it was raised in a recent debate in the House of Lords.

    Quite how it is all parcelled out I wouldn't mind knowing - but I will "eat my shorts" if it has any relevance whatsoever to any previous spend or the relative seriousness of the condition.

    Maybe on numbers of people affected? Or the cost to the economy of people not working? I expect it is a big combination of lots of factors and one of them will be 'advocacy' i.e. effective pressure groups.
  5. olliec


    London, UK
    I think ME research levels are low partly because we patients have historically not been organised enough or well-funded enough to lobby effectively. We can see today the NRA in the USA have absurd arguments, and yet with funding and backing they get a lot of their interests met. When SW said silly things in the 1980s most patients wouldn't even know, when that happens now patients know within hours.

    But if the Government looks at these things purely in terms of money, then the costs they have for the illness will primarily be medical and benefits support. Those costs are immense for the ME patient community not because anyone gets a great deal, but because of the sheer number of people claiming. Do we have any figures for the % of the ~240,000 MR/CFS patients who are claiming benefits? That would be a useful figure to make an economic argument.

    My take on the £1.6m is it's imply not enough. £6.60 per patient per year is not enough to make any progress. The Open Medicine Institute are seeking $13m just for their own projects.

    I've not yet found the figures I'm looking for. I'll keep looking but if anyone knows where I can find them, do let me know. I'm actually v interested in UK hayfever figures (number of sufferers, and MRC research spend) as I know a similar comparison has been made in the US, that more money is spent per year on hayfever research than ME/CFS.
  6. Dolphin

    Dolphin Senior Member

    Haven't read all of thread but it isn't really £1.6m per year, as the projects are spread out over several years, unless one simply counts research announced in a year (in which case I think it is £0 m for 2012).

    Cort did an article at one stage where he mentioned the UK giving more per person than the US per year, but I don't think one can say that from one blip.

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