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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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UK Govt Funds Biomedical CFS/ME Research! Or Does It?

Discussion in 'Action Alerts and Advocacy' started by Mark, Jan 25, 2010.

  1. Mark

    Mark Acting CEO

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    You get to vote!

    So far, 2 people think this parliamentary statement answers the question, 1 (me) does not, and I presume it's therefore understood that the "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" is part of an ongoing biomedical research programme funded by the UK government. If you have reason to doubt that Dr Clark's research is biomedical, please post details, and if you feel the parliamentary answer is misleading, then annotate and explain why - or just Vote No!

    My reasoning for voting no is that the answer to this question, as always, implies that research is biomedical when it is not. Is the Queen Mary College study the only biomedical project? They don't say so, leaving it open to the reader to assume that some of the other programmes in the expenditure are also biomedical. Is this one even biomedical? I don't know. It sounds like it is, but they don't actually say it is...
  2. Katie

    Katie Guest

    Did a little research, Dr C Clark works in Preventative Medicine http://www.dir.qmul.ac.uk/search?terms=Clark Which is a plus for the biomedical column, even if he was looking for psychological preventions, I would have expected that project to have been run by a psychiatrist as lead. However, we have learnt through Dr Kerr's experience the psychological bias at the MRC, they might have been more receptive to this type of study due to it's psychological component, see next sentence.

    However, IBS has recently been targetted by CBT http://en.wikipedia.org/wiki/Irritable_bowel_syndrome#Psychotherapy As IBS can be triggered by anxiety, (not all cases but the nervous system is all connected to the GI tract - it is why some people throw up or rush to the loo under stress)

    ME research connected to the government is smoke and mirrors. Maybe some FOI requests would help Mark, you up to that? Not sure what good it will do you at the end of the day but I sense you are brewing a plan?
  3. Dolphin

    Dolphin Senior Member

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    Dr. Charlotte Clark works in the psychiatry section: http://www.wolfson.qmul.ac.uk/psychiatry/staff/clark_c.html . The research is with Peter White. Follow my sig to read more about his views.
  4. Katie

    Katie Guest

    Bugger.


    Yup, more psych research for us. Lovely.


    Glad you're on the board Tom, your google powers are far greater than mine ;)
  5. Dolphin

    Dolphin Senior Member

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    Thanks Katie. Although it was Lucy Clark who wrote that letter that I mentioned (i.e. not the person who got the grant). But basic point about who she (Charlotte Clark) is remains.
  6. *facepalm*

    728,000 - is that the best they can do??
    Considering ME is more prevalent than MS and almost as prevalent as diabetes, you'd have thought that 728,000 is a drop in the ocean.

    [balls fists... very slowly... in frustration]

    -Rachel xx
  7. Dolphin

    Dolphin Senior Member

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    Personally, I think 728,000 wouldn't be bad if it was on decent research. The problem is that it is all being done by research of the CBT School of Thought aka the Wessely/Sharpe/White/Chalder School of Thought.

    When I checked a few years ago, MS was only getting 1m. Then there was a 2m trial of Cannabis.
    While the MS Society was raising 11-13m a year.

    By far the biggest when I checked the figures a few years ago was Breast Cancer at 11m. Most were much lower. There are a lot of major illnesses. And thousands of conditions in total. And the MRC pays for basic biological research and also for non-illness specific research. So even if we got a fair amount, it wouldn't be enough in my mind - I think the ME community should be trying to raise money and could raise more than a "fair" amount from the MRC.
  8. Mark

    Mark Acting CEO

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    Thanks for your clarifications Tom. It's useful to put the 728k in context.

    If more is known that the Clark study and the "risk factors" etc do not constitute biomedical research (it sounds to me like the parliamentary answer is using the study's title to imply that it, and maybe some of the rest, is biomedical research when in fact it is not), then that detail needs to be posted against the parliamentary answer on TheyWorkForYou, and a follow-up question posted, no? Perhaps others are working on this? - (I don't know who posted the original parliamentary question).

    In terms of "brewing a plan", it just seems to me that if you were to list the top 5 scandalous things about ME/CFS in the UK, the fact (is it a fact Tom? Any subtleties here? And what about pre-1991?) that there has never been any publicly-funded biomedical research into the condition and that the entire research budget still goes to psychology/psychiatry researchers, would surely be in that top 5. In fact it seems to me like possibly the single biggest point to be making. So it was no surprise to find that this is the only question that seems to have ever been asked in the house. Yet it always seems to be fudged by misleading answers. I discussed this with my friend in the house and learned that this is basically where professionalism comes in, and the art of pinning down an answer, particularly by having somebody who knows what they're doing being the one to ask the question - and follow it up if it isn't answered properly. I guess there's an art form to wording the question. My contact said the people drafting these responses are absolute geniuses at not answering the question you want answered: this is absolutely typical and they are very, very good at being evasive; it takes considerable skill to force them to answer properly.

    So anyway, if there's a plan, it's to get this question answered honestly. Example of what I would like to see confirmed in Hansard: "Can the department confirm that since 1991 there has never been any publicly funded biomedical research into ME/CFS?". Or maybe if you asked them the total amount spent on specifically biomedical, or asked for a breakdown how much was psych and how much biomedical, maybe that would pin it down. I'll discuss further with my contact and perhaps there will then be a discussion in this thread on how the parliamentary question should be followed up, but it seems to me that in terms of parliamentary campaigning, this is a pretty key strategic issue. I'm surprised that whoever asked the parliamentary question was satisfied with the reponse, incidentally...am I missing something?!
  9. 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

  10. Dolphin

    Dolphin Senior Member

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    Here's a sample of the type of research C. Clark will do.

  11. Dolphin

    Dolphin Senior Member

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    Here's a study P.D. White (who is involved in the grant) did this year. I expect the grant will pay for this type of research. It's not biomedical.

  12. Dolphin

    Dolphin Senior Member

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    There are subtleties. I've given the list of grant applications the MRC have approved since 1993/1994 (not sure if anything much before that). However, researchers have been able to tap into bits and pieces of public money for some of their research - but generally it also involved private money as well. For example, Julia Newton has some sort of MRC funding and it has helped pay for some of her research; similarly Basant Puri held (I think he no longer does) some sort of MRC position and so the MRC paid for some of the funding. The NHS often pays a little bit of the money towards J. Kerr studies.
  13. Mark, what does your friend in the House think about asking a question like this:

    "Since 1991 how much funding has been awarded by the MRC to studies which aim to find the CAUSE of M.E.?"

    ?

    That should eliminate all of the studies mentioned by tomk above, except possibly one which looks biomedical.
    The rest are treating symptoms.
    That should be clear to everybody, even beaurocrats and politicians who are ignorant of medicine and the debate surrounding M.E.

    Rachel xx
  14. Dolphin

    Dolphin Senior Member

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    One can generally say no biomedical grants have been funded by the MRC and no one objects. Morriss is a CBT School person (involved in the FINE trial for example and previously a trial of GET and Prozac (fluoxetine).
  15. Mark

    Mark Acting CEO

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    Another question has been asked, and 'answered', but still failed to get to the heart of the matter re: biomedical research:
    http://www.theyworkforyou.com/wrans/?id=2010-01-28a.313597.h

    Frustrating. The questions all ask about 'biomedical research' but the answers are always...well, weasely...

    I hope it's a matter of finding the right question. Can we come up with one that can't be fudged? It seems pointless to keep asking the same question and getting the same inadequate answer. The last 2 have mentioned XMRV which gives an opportunity to fudge the issue, perhaps it would be better to just stick to ME/CFS in the question for the moment? When I've settled on a question that seems like it might work, I'll ask it...

    I think it's quite a tricky job. TheFreePrisoner's idea of asking about research into the CAUSE is a good point but I suspect it would again be too fudgeable. Psychology research could claim to be hoping to find a 'cause'. I'm hoping to get some guidance on this from my friend soon, but she's way too busy this week and I'm really struggling to find time for this myself at the moment.

    The best I have so far is:

    "To ask the secretary of state for health whether it is true that, despite its stated committment to do so, the MRC has never funded any research into the biological basis of CFS/ME."

    Problem: as TomK has identified, there are small bits of research that may qualify as biomedical - that would give them the chance to say "no it is not true: for example, here's one we gave 50 to".

    ...so perhaps:
    "To ask the secretary of state for health which of the CFS/ME research projects funded by his Department constitute 'research into the biological basis of CFS/ME' ".
    or:
    "To ask the secretary of state for health what proportion of his department's current research funding for CFS/ME is 'research into the biological basis of CFS/ME' and what proportion is 'psychological' research".

    But I still can't quite satisfy myself that the question is quite right. I'm looking to get it on record that there has never been any publicly-finded biomedical research into CFS/ME - or at least, if there have been little bits and pieces, to get a total figure for what has been funded.

    Any more ideas?

    And don't forget to vote 'No' if you feel the question over biomedical research remains unanswered...
  16. Voted!

    Will get my thinking cap on.
    I must admit, that most recent question is the best yet and they definitely had to fudge an answer.

    Rachel xx
  17. Katie

    Katie Guest

    Ok, this is way out there but rather than going on a research angle why not ask them about whether they know the cause of ME/CFS (i.e it is triggered by a viral infection and maintained by illness behaviour la-di-dah) because they won't be finding biomedical research into a cause if they think they already know, hence the continuing adventures of the psych brigade. For us the question of cause is still out there but for them it might be a done deal, "let's have some CBT, preventatve studies and will someone shut up Kerr". The way I've phrased it needs work but I thought it was worthwhile discussing going back a step and asking a stupid question which could well be enlightening.

    Question: What hypotheses or evidence does the MRC use regarding the cause of ME/CFS when deciding grants for further research?
  18. Marco

    Marco Old blackguard

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    The trick is to ask a question so specific and unambiguous it can't be fudged.

    Off the top of my head something like :

    To ask the secretary of state to specify the amount of MRC funding (from x year to y year) into the causes of ME as a total, as a percentage of the total MRC budget and in comparison to funding for diseases with a similar rate of incidence in the population (can't think of the word at the momement) such as Y and Z;

    Further, to ask the secretary of state to list the research funded by the MRC into the causes of ME for the same period broken down by :

    Date of application, title, funds awarded, principal researchers including specialism, date of completion, and whether the research was primarily biomedical or psychosocial;

    and to list those studies where MRC funding was sought but not funded (broken down by the same criteria).


    Of course they can always state that these details can't be provided due to 'disproportionate cost'.
  19. V99

    V99 *****

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    Could someone clarify the situation for me a little better, I'm a bit confused.
    Are there two separate studies?


    Hansard, 12 Jun 2008 : Column 504W
    Dr. C. Clark, Centre for Psychiatry, Barts and the London School of Medicine: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (funding approved in November 2007 367,000)

    Hansard, 7 Dec 2009 : Column 46W
    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.


    :innocent1:
  20. Dolphin

    Dolphin Senior Member

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    Yes, they are the same study. The money for Charlotte Clark's study was (presumably) spread over more than one year and so that's why the figures don't match. One can check the length of funding on the MRC website with a little effort.

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