Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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MRC's relationship with funding biomedical research into ME/CFS.

Discussion in 'Action Alerts and Advocacy' started by V99, Jun 5, 2010.

  1. V99

    V99

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    I'm trying to find out whether the MRC has ever funded biomedical research into ME/CFS. I've had a look, but could see no posting.

    Currently the MRC has put ME/CFS as a priority research area, with Stephen Holgate as chair of the MRC CFS/ME Expert Group. Recently Annette Brooke MP, led an adjournment debate in the house of commons, where she ask the Health Minister Gillian Merron about this very issue.

    Health Minister's statement on MRC & funding.
    http://www.parliament.the-stationery-office.co.uk/pa/cm200910/cmhansrd/cm100223/debtext/100223-0023.htm
    Although the Minister indicates that funding has been given for this particular area, she fails to mention which area she means. ME/CFS or biomedical research into ME/CFS?

    Looking at the MRC Chronic Fatigue Syndrome/Myalgic Encephalomyelitis web page, they list the following completed and current studies. http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm#P49_3252

    The only study I can see which may involve biomedical research is the one at Queen Mary College, University of London. General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes. After digging a little, I found the following:

    http://docs.google.com/viewer?a=v&q=cache:Vc5X4DViAXYJ:www.pacetrial.org/docs/participantsnewsletter3.pdf+Dr+C+Clark+risk+markers+cfs+me+pace&hl=en&gl=uk&pid=bl&srcid=ADGEEShbrJvkgY50M0Hb023hmrIMhMuo7QtqW3C7_GWdjfWnDDUki3lQGe0ctl58riHUrKpAqY1Yyrnqb9nyXv0Gdk3rmkfHfzZkEOBVGzBww55MKJgwtPKXH8X7q8gdZPKZVLLF95jK&sig=AHIEtbTiVQMA1SAxws8_qGneo1OxsWABtw
    and this from the Centre for Psychiatry.

    http://www.wolfson.qmul.ac.uk/psychiatry/research/pr/
    This section caught my eye.
    Does anyone have further information on this study? Is it in any way a biomedical research study?

    I'm going to assume for now that it won't be, and end with the following.

    I am aware that the APPG on ME will be taking a closer look at the MRC, but for now government Health minister are willing to, at best mislead a member of parliament, at worst lie to them. It will be interesting to see what the new Government does with question of this nature in the future. I think I will try to get my local MP to find out, get them to ask a direct question, what biomedical research has the MRC funded into ME/CFS?
     
  2. Sherby

    Sherby Sherby

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    Its clear to what direction the MRC is going. I believe that Prof P White sits on a MRC CFS advisory Board. Also Prof Rona Moss-Morris Via The Royal Society of Medicine Webcast.
    Stating not to go to the MRC asking for more Biomedical funding, but only allow funding for BioPsychosocial research . You can find it at 25.10 Min's as per link provided.

    http://rsm.mediaondemand.net/player.aspx?EventID=1338

    Have a look at this link if interested about White and Wessely

    http://www.rsm.ac.uk/chronicfatigue08/index.php
     
  3. V99

    V99

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    Thanks Sherby.

    Unfortunately, I cannot get the video's to work, but I can access the slides. I've not heard of Prof Rona Moss-Morris before.

    I wish we had someone here in the UK with lots of money, in the know, and with a conscious. Do we really need to have a major breakthrough, to get funding to have a small breakthrough?
     
  4. Mithriel

    Mithriel Senior Member

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    I think there might be something about this on the ME research UK website.

    I'm sorry I don't have time just now to look.

    Mithriel
     
  5. bananaman

    bananaman

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    http://www.meresearch.org.uk/information/publications/casetoanswer.html

    "The Medical Research Council: a case to answer? ME Research UK."

    In May 2003, the Medical Research Council (MRC) announced its “research strategy for CFS/ME”, widely welcomed as the first formal research strategy for the illness. It listed a number of strategic themes of particular importance (case definition, epidemiology, pathophysiology, interventions, health service research, research capacity and the value of lay participation). Subsequent initiatives by the MRC included the issue of a notice highlighting CFS/ME as a current strategic priority (2003), a CFS/ME workshop (2003), and a “Joint Action for ME” workshop (2006).

    So, what research has since been funded? Well, at least five separate studies (see below) costing at least 3,180,900 have been supported. From the bald titles, it is impossible to determine what each involves, but it seems that three fall far short of being definitive (one is for “indirect support”, one is for a “CFS-like illness”, and one is simply a feasibility study, albeit an expensive one), while the remaining two are randomised clinical trials (RCTs) of psychosocial strategies.

    From details published in the National Research Register (before it ceased publication in October 2007), we know that the largest (PACE) trial is a four-arm RCT comparing cognitive-behavioural therapy (CBT), graded exercise therapy (GET), adaptive pacing and “usual medical care” alone. As its blurb explained, “"CBT will be based on the illness model of fear avoidance… GET… on the illness model of deconditioning and exercise avoidance"”.

    The FINE trial, by contrast, offers severely affected patients supportive listening, GP “treatment as usual”, or a nurse-led self-help approach which includes elements of CBT and GET delivered in the patient’s home (four 90-minute sessions, with six 30-minute phone conversations over 18 weeks), with a qualitative interview to explore “patient views on illness causation, beliefs about chronic fatigue… and previous experience of treatment and doctor–patient relationships”.

    In total, approximately 91% of the total grant-spend on ME/CFS in five years has gone on trials of non-specific management and coping strategies. It is important to point out, however, that neither of these trials is actually worthless; in an ideal world in which 100 million had been invested over five years in ME/CFS research, a 3% spend on assessing the usefulness of various coping strategies, such as CBT, relaxation or meditation, might have been acceptable. The point at issue is that most of the MRC’s inadequate grant-spend has gone on this aspect at the expense of truly biomedical research, the reverse of the situation in other illnesses such as multiple sclerosis or rheumatoid arthritis. Even the dogs in the street would think this record dismal.

    "Continued on link" http://www.meresearch.org.uk/information/publications/casetoanswer.html
     
  6. V99

    V99

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    Thanks baananaman.

    Gets right to the point doesn't it.
     
  7. Mark

    Mark Acting CEO

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    There was discussion about this subject before here, but I can't think of an obvious way to search for it. If you search theyworkforyou.com there's a section to table parliamentary questions and if you search for "myalgic" for example you see these questions. They are asked repeatedly and always the answer fudges and misleads by dodging the issue of what is psychological. It really needs the question asking in a more definitive way, and pursuing properly. It's a critical point because arguably the departments answering that question are misleading the house.

    Tomk answered this question once, probably in about Jan or Feb, basically there have been occasional tiny bits of money from other budgets in support of some biomedical researchers - eg Kerr - but essentially it's pretty much fair to say there has been no publicly funded biomedical research in the UK or US since 1987 or so (and probably a lot earlier).

    I hope you manage to get to the bottom of it and find a definitive list - and even get that acknowledged in the commons - because it's a crucial component in the campaigning case. When you list 4 or 5 key messages, one of them has to be something about the complete lack of any biomedical research, so that fact needs nailing rigorously and comprehensively. But unfortunately it's tricky to come up with the definition that forces a distinction between 'biomedical' and 'psychological' funding and comes out with a nice simple sound-bite and a number. It's a crucial task though: good luck!
     
  8. V99

    V99

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    Thanks mark, your advice is very welcome.

    Going to put a lot of thought of thought into this and try and get it right.
     
  9. Marco

    Marco Grrrrrrr!

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    Near Cognac, France
  10. V99

    V99

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    This is what I like about this forum, thanks Marco.
     
  11. I don't know if you've seen this, but ME Research UK have a good articles with useful MRC information.

    Research challenges in ME/CFS
    http://www.meresearch.org.uk/research/reviews/challenges.html
    (MRC info starts paragraph 4)


    The Medical Research Council: a case to answer?
    http://www.meresearch.org.uk/information/publications/casetoanswer.html


    MRC funding only psychological interventions is then tied into these findings:

    Question marks over evidential basis of claims for psychosocial therapies
    http://www.meresearch.org.uk/research/reviews/psychosocial.html
     
  12. V99

    V99

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    That's great DysautonomiaXMRV.
     
  13. My pleasure, if I can be at all helpful to anyone it makes my day - sadly this has not progressed in terms of making beds/washing up or cooking!

    On a serious note, one can only really 'escape' from the UK's assumption of CFS being a biopsychosocial disorder by never refering to the word 'CFS' at all,
    or the more hybrid version of the Department of Health's CFS/ME.

    I note on the NHS choices section about 'CFS' they never actually dispute ME does not cause brain/spinal inflammation - which I thought was interesting? Interesting because if the MRC are to ever refer to 'CFS' or 'CFS/ME' as ME - then they are not supporting a public health information website read by millions.

    http://www.nhs.uk/me/introduction.aspx

    Here is a direct quote:

    Also note, that the wording does not dispute ME causes brain/spinal inflammation.



    This means that NHS Choices is not in agreement with the MRC, a most puzzling situation for person's interested in the neurological disease ME (ICD-10 G93.3) and the biospychosocial disorder of 'CFS/ME' that is coined by the UK Department of Health as two illnesses being contained within one forward slash.

    Due to the difference in the NHS describing what ME and CFS are that is at odds with the MRC's belief both are the same - the MRC are thus obliged to confirm to the general public:

    A) ME (Myalgic Encephalomyelitis) does not cause inflammation of the brain & spinal cord (which would be at odds with the NHS)
    B) ME is not a neurological disease affecting the central nervous system (which would be at odds with the World Health Organisation and ICD coding of Benign Myalgic Encephalomyeltis)
    C) CBT/Graded Exercise is a robust method of treating neuro inflammation in ME.
    D) Refusing to fund research into neuro inflammation in ME is beneficial to patients.
    E) Refusing to fund all other bio-medical research into ME is also beneficial to patients.
    F) Placing files on ME (Myalgic Encephalomyeltis) under the official secrets act until the year 2071 is beneficial to patients and aids research into ME.

    Please see the following article: http://www.investinme.org/Article-358 The MRC and Secret Files on ME.htm
     
  14. V99

    V99

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    Agree, CFS is a bad word to use in the UK, I tend to use ME. However, because of the use of CFS in the USA and elsewhere, I sometimes say ME/CFS as opposed to CFS/ME. To be honest I'm starting to wonder if I should use ME/CFIDS when discussing the world wide situation, and ME for the UK. You know what I mean, I'm sure. Either way, when I contact my MP it will be ME.

    The NHS direct website is definitely of interest, thanks again. The points you raise do highlight the mess they have made of this.

    How do you feel about the proposal for Scotland? Canadian criteria for ME, NICE guidelines for CFS? (CFS in the UK really being plain old chronic fatigue - and just in case anyone thinks I'm being offensive, I have that diagnosis as it's all they use)
     
  15. justinreilly

    justinreilly Senior Member

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    I agree this is misleading. A list of studies considering the feasibility of looking at telling tired people they are not sick do not qualify as biomedical ME research.
     

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