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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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UK: House of Lords: Countess of Mar asks real reason for ME blood ban, 8 Nov

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Nov 8, 2010.

  1. Bob

    Bob

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    A 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)
     
  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Excellent work Bob. So the answer to the question 'What, if any, funding has been spent on novel biomedical research into ME/CFS in 2009-10?' = 0.00. Dire isn't it?

    Strange that they didn't mention the NIMR XMRV study though - I wonder who funded that? Or perhaps that comes after the period mentioned in the above accounts ie after March 2010?
     
  3. Mark

    Mark Acting CEO

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    Part of where it's get complicated to communicate is that there is other research from other pots that doesn't appear under the MRC heading. So Wessely and McClure's fruitless search for XMRV doesn't come out of this pot, for example.

    Another part that's tricky to communicate is that there are always one or two studies that kind of look like proper studies on the face of it but aren't really biomedical after all. So "general and specific risk markers" sounds like it might be kind of biomedical at first glance, but as I recall it's basically a survey of psychological and other factors. And there is occasionally a token biomedical study - perhaps one debunking some piece of genuine biomedical research - to make it all look 'balanced'. Parliamentarians and observers glancing down the list won't look at the detail critically enough and won't want to get bogged down in the arguments necessary to see what's going on. That's why it's so crucial for the question to pin them down - somehow, and I'm not sure how - on how much was spent on biomedical research.

    Finally, it gets confusing when you say to people things like "there has never been any research" or even "there has never been any government-funded biomedical research" because if they are also aware of some piece of UK research like McClure/Wessely's debunking of XMRV, or the recent Scottish study finding blood cell abnormalities that was (I believe) funded by an ME research charity (ME Research UK?), then what you're saying sounds contradictory to them.

    There's a fundamental need to distil all this info about government-funded research into a simple, rigorously justifiable, easily understood sound-bite. Big long pages of explanation are all well and good, but they risk confusing people and dragging them into the mire of obfuscation that exists around ME. If we had some simple clear statements, with numbers, which couldn't be refuted, we could be much more effective.

    This year's figures are an excellent opportunity.

    It can fairly be said that a total of 109,000 was spent this year by government (one needs a phrase to cover 'government funding' that is accurate and doesn't run into the factor just mentioned about other pots of money), all of it on psych/behavioural therapies (but note that even the latter description isn't quite right because it needs to cover some aspect of Clark's study...it is always so tricky to pin down the sound-bite rigorously...(sighs)...)

    It can also be said, as noted above, that despite CFS being a "strategic priority" not a penny was spent this year on biomedical research.

    It would be really good to go through the history of MRC CFS funding and categorise and total up the amount: then one could total the amount of money spent on biomedical research in the last 20 years - and it wouldn't amount to a hill of beans of course.

    Soundbites like that do get through to people. I find that when talking to others I can always get so far with the case but it's points like this where the argument gets muddied.

    And once you get down to the murky detail and describe much of what goes on, I often find that simply describing a few basic facts which are tricky to pin down makes me sound like a conspiracy theorist. We're very much victims of that sort of scenario. Simply describe things as they are and people will tend to think "Well that can't be true, it must be an exaggeration; it's so outrageous that I'd have heard about it before now if it were".

    We need those snappy campaign quotes badly.
     
  4. Marco

    Marco Old blackguard

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    "It can fairly be said that a total of 109,000 was spent this year by government"

    How about, the UK government states that research into the causes of ME/CFS is a priority. In 2010, the UK government spent a total of 40 pence for every man, women and child in the UK afflicted with this disease.
     
  5. alex3619

    alex3619 Senior Member

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    Hi Marco. ain't math wonderful? Given that probably only one in ten of those with XMRV (if this is proven as a cause) are diagnosed with ME or CFS, the the figure will drop to 4 pence. If even more are affected, then it could go to 1p or less.

    Bye
    Alex
     
  6. Marco

    Marco Old blackguard

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    Yep.

    Put another way, if we could persuade each of the estimated 250,000 'confirmed' UK ME/CFS patients to donate just 40p per week into a research fund we would have a private pot of 5 million pa to spend!
     
  7. Bob

    Bob

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    Hi Mark, I agree that it's always useful to think about how to effectively communicate our messages, but I think that this year's figures are so dire that they pretty much speak for themselves, and we don't need to think hard about a way of expressing them effectively.

    The UK government's answers in parliament say that the MRC awarded "109,000" in grants for ME research in 2009/10, so this is a figure that can safely be quoted. This is an appallingly low figure by any standards, for such a complex and debilitating disease which affects so many people.

    This is bad enough in itself, but it gets even worse when we talk about MRC funding for biomedical research into ME, which was apparently zero for the year 2009/10.

    Based on these MRC figures, I think we can safely say that there was zero government funding for biomedical research into ME in the year 2009/10.
    And this is probably the most effective message that we can use.

    I'd like to know how this compares with funding for MS, a similar neurological disease.
     
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    From ME Association website today:

    Written answer by Minister for Universities and Science David Willetts yesterday, to Parliamentary question on MRC funding for ME Research over past 10 years:

    http://www.meassociation.org.uk/?p=3200

    I particularly like this comment which clearly indicates how the MRC perceives the question 'biomedical':

    "“Biomedical” is not a category the MRC would normally use to classify research in its portfolio". !!

    Well that's convenient isn't it! I guess we'll have to root around again now and find out just what they do call it.

    Mark - agreed there has been great biomedical research from privately funded research charities such as ME Research UK (Dundee) and from ME Association funding too, which has borne great fruit, but I think here the concern really is - why are we not getting the big bucks from the MRC ie. why are we not getting big buck central funding for biomedical (not psychological) research?

    Yes patients have said this biomedical research is what they want for years and yes the MRC say on their website that it is a priority for the past few years - but it hasn't happened. Priority has actually been given to CBT/GET and PACE. Hence the Parliamentary questions.

    Apologies if I've missed this in your post above!
     
  9. Bob

    Bob

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    thanks pictureofhealth... well spotted...

    Notice that last year had the lowest funding ever, if we ignore the 'zero' years. And this is after the MRC set up the special working group two years ago, which was supposed to increase the research on ME. It doesn't seem to be very effective yet.

    It's interesting that a LibDem asked the question... I wonder if he is aware of his party's policy for ME, and is he asking that it be implemented?

    This new government does seem to be slightly more forthcoming with the answers surrounding the MRC and funding for ME, and also shows signs of being slightly more cooperative with our community... I hope that this is a positive sign that they might be more receptive to our cause in the months ahead.

    It's very convenient that the MRC doesn't know what 'biomedical' means... They obviously don't know how to use a dictionary.
    Luckily, we can work out the amount biomedical research funding for ourselves, and without using a calculator! (It's easy: 0+0+0=0)
     
  10. Mark

    Mark Acting CEO

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    Next question then: what categories do they use to classify research and how do these figures break down by those categories?

    Also, maybe we could turn it around and ask what proportion of the funded research was led/proposed by psychologists and psychiatrists? Rather than their categories (which I imagine are probably useless and obfuscatory) we could define the question some other way. And also maybe full details of what was proposed and what was rejected/accepted and why might be interesting. Even if that's defined elsewhere, getting the answer explicitly on record for all MPs to see is significant...as is the pressure of continuing the questioning until we get the answer we want.

    One may ask whatever one likes...but the question has to be tight, tight, tight if you want to get the answer you're actually looking for...keep plugging away...
     
  11. Mark

    Mark Acting CEO

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  12. Bob

    Bob

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    Totally agree with you Mark.
     
  13. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Agree with everything in your post Mark, especially the comments above.

    You are exactly right, it will be obfuscatory, for eg. Wessley maintains that any divide between the mind and body is illusory and a false dichotomy (or words to that effect).

    Of course he is right in many ways, but he uses this misleading approach to maintain funding for his primarily psychological approach via the MRC by saying that of course ME is a psychological and physical illness (?because stress causes change in the immune system? for eg). MRC will say they have no 'biomedical' approach for ME because it is a false dichotomy. This is just clever talk.

    In fact, I think I remember from a previous Dr Kerr comment that proposals for ME research can only be submitted under some category that also includes mental health. Eg. neurology and mental health (think Parkinson's, Alzheimer's etc). I cannot remember the exact department - sorry - Someone will know/remember this much better than I do. Dr Shepherd at MEA would know I would hope, or also, the guys up at ME Research UK.

    This is why there are assessors from biomedical specialities at the MRC ME grant funding panel (eg immunologists, neurologists), but also always a psychiatrist. Hope I've made this clear in an opaque kind of way!!
     
  14. Mark

    Mark Acting CEO

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    Yes indeed, they are all very big on this, and in more detail what it boils down to is that they don't actually believe "the mind" exists. Everything is physical. There IS no mind: they have done away with it. In a way that ends us up back where we started with a psychological approach to ME - but now it's cognitive behavioural therapy, which is considered to act on the "mind-body" ie the brain and doesn't believe in the "woo" of an actual mind sitting behind it.

    In other words, they do not believe that you exist. This is because, as scientists, they have no evidence for the existence of your mind, only for the processes going on in your brain, which they have correlated with reported experience and thus concluded that the processes going on in your brain ARE your mind. I think they probably get all this from Daniel Dennett, who I used to find very interesting too.

    Since you don't exist, your insights are irrelevant. If you ever feel like you are not really being listened to or empathised with, that's why.

    It's very, very clever talk. It gets past pretty much everybody because all this philosophical and neuropsychological stuff is not a major interest of most people and the distinctions are of course very subtle and philosophical. People look at what they're saying and on a surface level parts of it can seem almost identical to what I'm saying, but it's totally opposite and that's so hard to explain (sigh).
     
  15. Sasha

    Sasha Fine, thank you

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    Great! I've just registered a resounding "no". So far it's zero for yes, 19 for no. Says it all.
     
  16. Sasha

    Sasha Fine, thank you

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    I think it's just the emperor's new clothes/snow job. It's easily dismantled if you ask them why other diseases such as cancer etc. don't have treatments restricted to the psychological.

    I think the problem is that they're not in debate; if they just get to hold their own without challenge, they can get away with rambling off down a philosophical side-alley. It's the same as pointing and shouting, "Oh, look at that!" and then running away.

    Just shows the lack of challenge that today's media provides.
     
  17. Sasha

    Sasha Fine, thank you

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    Neuropsychiatry maybe? A bummer because our WHO classification is as a neuro-immune disease as far as I'm aware, not a neuropsychiatric one. It's the lack of immunological expertise that's the problem, I think.
     
  18. ukxmrv

    ukxmrv Senior Member

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    There used to be one MRC group that approved all research applications for Neurology and for Psychology/Psychiatric.

    http://www.meactionuk.org.uk/Notes_on_funding.htm (by Margaret Williams)



    The CMO’s Working Group report came out in January 2002, and despite it paying lip-service to the need to advance the understanding of “CFS/ME”, the MRC itself has today confirmed that from April 2003 to date, the MRC has turned down 19 biomedical applications relating to ME/CFS. Those included applications under the headings of pathophysiology, genetics, biomarkers, immunology and neuroimaging.



    By contrast, since April 2003 the MRC has funded five applications relating to “CFS/ME”, mostly in the psychiatric / psychosocial domain (Professor Francis Creed; Professor K Bhui; Professor Peter White’s PACE trial; Alison Wearden’s FINE trial, and Richard Morriss’ study of “medically unexplained symptoms”).

    and

    Wessely was on no less than three MRC Boards, which might explain why the MRC itself classified ME/CFS as a mental disorder --- see page 32 of the Report of January 2005 from the MRC Neurosciences and Mental Health Board’s Strategy and Portfolio Overview Group, which clearly states: “Mental health in this instance covers CFS/ME” (NMHB Mental Health Scoping Study Report).



    Most people who are interested in doing biomedical research into ME do not bother applying to the MRC, as they know their application will be rejected.



    Biomedical applications in respect of ME/CFS known to have been rejected include those by Professor Jill Belch (herself a Principal Fellow of the MRC) and Dr Vance Spence of Dundee, as well as Dr Jonathan Kerr of St Georges, London.



    A notable comment was made on 10th June 2006 by Professor Peter White, who at the fourth Oral Evidence Session of the Gibson Inquiry, said to Vance Spence words to the effect of: “If we hadn’t got the money from the MRC, do you really think that the MRC would have given it to you?”
     
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Re Obfuscation and blurring the distinction between mind and body (but skewing all research in favour of psychiatry) -

    please check out Dr Newton and Dr Jones' letter to Prof Wessely (in reply to his) in this thread link attached, if you haven't already seen it:

    http://forums.aboutmecfs.org/showth...wton-editorial-in-Occupational-Medicine/page2

    Newton and Jones have just published some ME research. Wessely is critiquing their biomedical approach stating that the distinction is unreal.

    Newton & Jones are funded some of the time by ME Research UK and the MEA and research autonomic and cardiac dysfunction in ME. They also research fatigue in Primary Biliary Cirrhosis and other physical disorders.

    Dr Newton and Dr Jones have responded swiftly to Wessley's letter suggesting that if there is no dichotomy between mind and body then perhaps Prof W won't mind including tests for autonomic and cardiac function at the NHS ME clinics!

    It is a GOOD letter.

    (Relevant to this thread, but not entirely on topic).
     

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