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MRC announces 1.5m research funding

Discussion in 'General ME/CFS News' started by Bob, Jan 27, 2011.

  1. Bob

    Bob

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    The UK's MRC (Medical Research Council) (This is the UK's main government funding body for medical research) have announced 1.5m research funding, into the 'causes' of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

    http://www.mrc.ac.uk/Newspublications/News/MRC007675?dm_i=1HO,CPZZ,31ES1,107F4,1

    And here's a statement from Action for ME:

     
  2. Sasha

    Sasha Fine, thank you

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    Great news! 1.5 million is still peanuts but at least it's peanuts in the right direction this time - I like autonomic dysfunction & viral stuff being on that very short list and the absence of psychiatry. Fingers crossed.
     
  3. Bob

    Bob

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  4. Mark

    Mark Former CEO

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    I'm afraid this is no kind of breakthrough whatsoever, yet. There's a very high risk indeed that this is simply "business as usual". In terms of money, it does not represent an increase in funding, although it's designed to appear that way - concerning in itself. In terms of what type of research is going to get funded in the end...well, we will see, but I don't read anything here about a change in the make-up of the panels that will make the decisions.

    Consider this: for the last 10 years or more, the typical funding for ME/CFS research via the MRC has been around the level of 750k - 1.2m. Historically, 90% or more of that money has gone to psychological research. In the last financial year, however, that funding level dropped to a historic low of 109,000 for the year. And now we have an announcement of a 1.5m fund. Well, if we average that 1.5m between this year and last year, it looks suspiciously to me as though we are still at exactly the same level of about 800k per year that we have always been at. No funding last year, 2 years worth this year. Makes for a good headline before we have chance to make publicity of the bad headline of 109k for last year.

    And if the funding level is in reality unchanged, then what reason is there to believe that the funding priorities and the situation of political manipulation of the funding committe has changed? What reason to believe that this budget won't yet again be swallowed up by psychs? Answer: none. The list of symptoms and the characterisation of the disease are nothing new - the psychs' theories include mention of all those factors.

    Some close analysis of what is and what is not on the list of priorities and the characterisation of ME/CFS here, might be in order, and others on this forum are well-qualified to highlight the subtleties of the language chosen (immune dysregulation rather than immune dysfunction, for example, appears to carry a questionable assumption) and to identifty the elements of the condition of ME which are not included on this list. They describe it as "CFS/ME" - a spin and a stance which always makes me angry - and also this perspective seems to be reflected in their characterisation of "CFS/ME" as well: it rather looks like they are looking at the broad spectrum of conditions with similar symptoms to ME symptoms first, and ME is tagged on under that heading. Mentioning 'sleep disorders' in particular is a little troubling: significant though that symptom is, one can easily imagine how this entire budget could be swallowed up by researchers into issues like that, as a single issue, and could end up illuminating nothing about ME - I see it as a secondary or tertiary issue in my case, albeit one that has very significant and obvious consequences.

    So I don't want to be a misery-guts about it, but really it's still a paltry sum in the context of the size and scale of the problem - well under 10 per sufferer, and I pay a lot more tax than that every year - and there's absolutely no evidence in this announcement to suggest a change of policy, nor is there anything to suggest to me that any decent research will end up being funded under this budget. We shall see...but if they carry on business as usual with this particular round of funding, god only knows how the patient community will respond in a year or two's time: in case it is not crystal clear by now, we have absolutely had enough of this continuing criminal neglect. Time is running out for the MRC to demonstrate that it really is serious about the "strategic priority" of investigating the real cause(s) of "CFS/ME" / "ME/CFS".
     
  5. Mark

    Mark Former CEO

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    PS: having been so negative, and now having read the MEA statement, I should balance by identifying the positives. Ring-fencing is indeed rare for the MRC, and a positive step but clearly a necessary one after last year's 109k insult. And the list of areas for investigation is, it turns out, expanded in a positive way. So there has been some good work done here, and it is perhaps a small step in the right direction...but it's still the case that there's a lot that needs to happen before we can believe that anything has really changed.
     
  6. Bob

    Bob

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    Agreed, it's a tiny step in the right direction; but it's much too little and 30 years too late.

    To put it into perspective, if there are 250,000 ME patients in the UK and they are spending 1.5m, then that's only 6 per year per patient.
    I spend more than that per year on toilet paper!

    And is the 1.5m a per-year expenditure, or just a one-off expenditure? (It looks like it's only a one-off commitment.)
     
  7. garcia

    garcia Aristocrat Extraordinaire

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    Actually I agree with your first post Mark! It is a pathetic amount of money, made even more pathetic by the number of nebulous areas it is spent over. It this was 1.5 million going directly to the WPI it could really make an impact. Spent this way it will have zero impact other than to face-save the ever embarrassed MRC.

    As Bob says above, too little too late. Right now they are just trying to buy our silence.

    6 won't even buy me a one-day travelcard in London.
     
  8. maryb

    maryb iherb code TAK122

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    I agree with Mark and Garcia - a drop in the ocean and nothing to suggest anything that will take us nearer to proper treatment for this illness. Its a sop I think they're trying to pre-empt criticism in the debate next week initiated by Ian Swales MP. Too much of a coincidence for a cynic like me.
     
  9. Enid

    Enid Senior Member

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    All I can say is "Wow" having watched MRC resistance too slowly broken down from "some" official (we know where) party line. Has to be a beginning along the correct path. I note also the correct title of ME - encephalomyalitis which started my own.
     
  10. cigana

    cigana Senior Member

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    I also agree with your first reading Mark...Can we get a statement together quickly to send to Ian Swales MP? Or is he savvy enough to see through this? Possibly not (if he isn't very aquainted with the history of ME) so I'd like to write something and maybe you guys can look over it.

    Mark
     
  11. Angela Kennedy

    Angela Kennedy

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    You need to look at the pdf of the meeting Sasha. I'm afraid psychiatry is not 'absent' at all : (
     
  12. free at last

    free at last Senior Member

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    Im the first to cry foul of anything the brits do, but heres my take for what its worth.I dont think averaging out the funding over time, really tells us a lot other than the fact that funding had been getting less and less leading to the sorry state of affairs last year of a hundred grand going on the shrinks, this strikes me of a about turn of sorts clearly this funding is nearly 15 times greater than last year, so one has to ask why increase it by 15 times ? I belive its uncertainty of whats happening around the world, for example the WPI reacently showing the cytokine profiles of ME/CFS XMRV positve patients against healthy folk, are so drastically different, that those figures must to a degree scare the the MRC into backtracking a little incase things get worse. for example another study linking xmrv ( sing maybe lipkin ) even judys comments about the politics will soon be at a end period. must to a degree shake the MRC, if for no other reason, they might well be wondering what inside info is coming its way to Judy M that would lead her to make such a statement. Add other things into the mix like the Dundee ME/CFS study proving white cell die off ( according to those who did the study indicates a virus is being fought ) must yet again shake the convictions of the MRC to belive everything Wessley sharp and White having been telling them for years. I belive thats the case so much, that by doing this extra funding for this year ( compared to just another 100 k that they could have trotted out again) they in effect are protecting themselves if something major happens in the Feild of ME/CFS research soon. Especially if they allow some of this funding to go studys of the immune system or virus hunting, ( as i suspect they will ) will just further there stance away from the neglect, and under funding, and funding only to the psychiatrists that will lead to dramatic attacks on them if things go good for us in the coming months regarding ME/CFS research around the world. These are the real reasons i belive this happening now. i could be wrong. but politics has always been at the heart of decision making for ME/CFS in the uk. And i reckon this no different. if im right it clearly proves only through science can we really shake the grounds that the MRC walks on, and maybe the things im mentioning are indeed to a degree doing just that. lets hope so but agreed its a small reluctant about turn.
     
  13. Angela Kennedy

    Angela Kennedy

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    I don't think we can discount the Malcolm Hooper complaint about the PACE trial, or the 'debate' scheduled in the House of Commons. This new announcement is likely to be a way to take the wind out of the sails of those who have consistently investigated and critiqued the MRC for their failure to provide funding for biomedical research (not just Hooper by the way, but including people like Ian McLachlan, and indeed myself and Jane Bryant of One Click).

    I think we also have to factor in the minutes of that meeting attached to the MRC news - in which there is a LOT of 'wriggle room' to be seen, especially around 'sleep disorder' and, much more worryingly, 'psychological' issues as 'precipitating and perpetuating' factors.

    This is not something to celebrate.
     
  14. Angela Kennedy

    Angela Kennedy

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    The pdf I'm referring to is in this statement by the MEA, distributed on Co-cure today:

     
  15. Bob

    Bob

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    A bit of background, as far as I'm aware...
    The ME community has been putting pressure on the MRC for years, and Prof Steven Holgate set up the MRC's ME working group about a couple of years ago which brought together a number of scientists with a view to looking at how they could move forwards with an agreed program to improve funding for ME research (or that's how the working group was presented to the public anyway). That (very slow) process has now resulting in this funding pledge.

    Interesting that the announcement was made just before the adjournment debate, so maybe some politics was involved in the timing. But it's a fairly new government, so I don't think that they need to be defensive about the government's ME policies, they could change them and improve them.

    The LibDems (the UK government's coalition partner) had quite a helpful pre-election policy for ME, so it would be good to see some positive action from them, and the Tories are fresh to government, so I was hoping that they might be receptive to pressure from the ME community as well, as they have a fresh set of ears, and they must have spent time in opposition receiving many representations from ME patients and the ME community. I was hopeful, anyway, but I haven't seen any significant movement from the government so far.
     
  16. Enid

    Enid Senior Member

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    Quite agree Bob - a good time for a new beginning - whilst pressure kept up for the real thing.
     
  17. garcia

    garcia Aristocrat Extraordinaire

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    Unlikely I would have thought given the contempt with which the tories hold sick people, poor people and those forced to live on benefits.
     
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  18. Angela Kennedy

    Angela Kennedy

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    Quite right Garcia : (

    We cannot place hope in party politics here. Mistreatment of the ME community has a fine tradition from all parties in power.
     
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Free At Last is right, trhey are trying to give themselves some scrap to hide behind when this blows up, to avoid being life imprisonment, cause when this DOES blow up one day, the fallout will be enormous.
    You don't slap a 72?? year gagging orderon an MRC file unless something really damn catastrophic (for politicians' and bureacrats backsides) is being hidden.

    Even Wessely has been delving into "HPA Axis" issues as his "safety blanket" for when he cops it.

    garcia
    yeah, the tabloids and Telegraph have been attacking welfare and the disabled for nealry 2 years now. they can't attack Jews, non-Whites etc any more due to folk finally having had enough of that horror (*), so we are the current scapegoat, to divert folk form the "man behind the curtain".

    (*) though if you know the British tabloids, they damn well come close to it, ugh, horrible EVIL trash.
    The "phone tapping scandal" will hopefully see many of the vermin in jail, after what has obviously been some attempt by some folk to have the issue "hushed up", but now it's blown up in their faces and major criminal investigations, even into the Metropolitcan Police's handling of it, have started.
     
  20. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    SilverbladeTE - you have a wonderful way with words!! Made me laugh. Spot on ..
     

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