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UK CMRC 2018 Conference - Prof Stephen Holgate

Discussion in 'ME/CFS research news' started by Cinders66, Oct 5, 2018.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I remember SH Saying something to the effect, that ME and CFS Research applications had to go by way of a certain MRC Committee, and a certain specialty, the head or a member of which was the great SW! ... and guess what they did to the bids, like Julia Newton's at the time? Reject, reject and reject again.....
    I thought the CMRC was a means of creating a new access point and a new MRC Committee, thus circumventing the SW of this world, that might deliver some goods..... or not...... as the case may be....
    Or maybe all the above was a figment of my imagination and of what I interpreted in a conversation with SH at some time....
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My understanding is that the new committee had already been formed. And CMRC cannot be an MRC committee if it is planning grant applications around its committee table.

    It may turn out to be a productive enterprise but it seems to me to be a way of being rules. Maybe if the rules are bent so far in one direction one has to bend them back the other way to have any chance of getting anything done.
     
  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    ladycatlover and MEMarge like this.
  4. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Never mind, "Mind the Gap", methinks separation would pay off!

    SW,

    "We should not accept this separation. The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases, a Sisyphean attempt to bring order to diagnostic chaos, is now working on yet another revision. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the ‘all in the mind’ slur, and let us get on withour jobs — improving the treatment of patients and their illnesses."


    Funding


    https://mrc.ukri.org/funding/science-areas/neurosciences-mental-health/
    Neurosciences & mental health
    The Neurosciences and Mental Health Board (NMHB) is responsible for the MRC’s investments in disorders of the human nervous system. This includes, and is underpinned, by fundamental research into the human nervous system, its normal development and function, which informs our understanding of the mechanism of disease.

    The Board’s strategy includes addressing the challenges of mental illness and neurodegenerative diseases as well as exploring what we can learn from the direct study of human brain tissue to gain insight into the human brain.

    To deliver its strategy, the Board supports investigator-led grants within its area of remit, and manages a range of strategic investments and partnerships. We also support the development of tools and techniques that help others carry out research on the nervous system. We are particularly interested in multidisciplinary research that will increase our understanding of the brain in health and disease.

    In addition to the Board opportunities, NMHB will prioritise for consideration submissions that meet the criteria of MRC-wide opportunities and cross-Board areas of research priorities, which apply to all Boards.




      • Experimental medicine - understanding disease mechanisms and therapeutic targets using human participants.
      • Advanced therapeutics - including cell/gene therapy, regenerative medicine, innovative medicines.
    Cross-Board research areas:
    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CSF/ME) research

    Units/Centres:




      • MRC Cognition & Brain Sciences Unit, Cambridge
      • Centre for Cognitive Ageing and Cognitive Epidemiology, Edinburgh (Life Long Health & Wellbeing centre)
      • MRC Centre for Neurodevelopmental Disorders, KCL

     
    Last edited: Oct 14, 2018
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  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Moderator note:
    This article is from 2008. Discussion sorting out the date has been deleted.


    https://www.meassociation.org.uk/20...et-to-discuss-biomedical-research-into-mecfs/

    Medical Research Council (MRC) and MEA meet to discuss biomedical research into ME/CFS
    Following the appointment of Sir Leszec Borysiewicz as the new Chief Executive at the Medical Research Council (MRC), the MEA wrote to the MRC to ask for a meeting to discuss the scandalous lack of government funded or commissioned research into both the underlying cause of this illness and approaches to management that are not simply behavioural (ie cognitive behaviour therapy/CBT and graded exercise therapy/GET). This correspondence can be found here.

    The key points to emerge from the discussion:

    • There is no realistic chance of the MRC providing ring-fenced money for ME/CFS research.
    • There is no realistic chance of the MRC commissioning research – as was recommended in section 6:5 of the Chief Medical Officer’s report.
    • The MRC was, however, keen to encourage good quality research applications into all aspects of ME/CFS, particularly aetiology/cause, and a highlight notice dating back to March 2003 had been issued to emphasise this point
    • The MRC does not receive many applications relating to the investigation of causative factors in ME/CFS – certainly in comparison to other neurological disorders.
    • Peer review of research applications relating to ME/CFS is carried out by the Board which is most closely linked to which aspect of the illness – eg epidemiology; immunology – the proposal relates to.
    • Funding for clinical trials is increasingly coming from the National Institute for Health Research (NIHR). More info on NIHR

    The multi-disciplinary group being formed by Prof Stephen Holgate is still to be completed and they hope to have their first meeting later in the year. This group will then be looking at some of the specific problems relating to ME/CFS research – eg how can we attract good quality researchers and research proposals in this area; what new areas of research need to be explored? – and hopefully coming up with some answers. There might then be a wider research meeting in the New Year. More information on this group.

    Dr Latimer has agreed to write a 500 word article on the MRC position on ME/CFS research for the October issue of ME Essential magazine. (written in 2008)
     
    Last edited by a moderator: Oct 14, 2018
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  6. NelliePledge

    NelliePledge Moderator Staff Member

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    They’ve been pissing about for 10 years - action is now required not words ie get the flip chart priorities thing done in a matter of weeks not 2 years and GET ON WITH IT
     
    Last edited by a moderator: Oct 14, 2018
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  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Just wanted to say keep up the good work...I can’t be the grumpy one all the time :)
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    I used to have a snoopy duvet cover with i think I’m allergic to mornings. I’m sure it’s possible to tell the time of day when I posted terse and sweary = am, waffle = night time, almost sensible = afternoon
     
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Notice the difference of tone from MEA BEFORE they started “collaborating” with the MRC in various working groups. MERUK used to be forthright too before they joined,( now left). Now mea and AFME are the mrcs biggest defenders, disastrous from my point of view, clever from MRC angle in how to buy off the main spokespeople with essentially crumbs but starving people beating down enough sometimes accept crumbs. My preferred response would have been to mobilise a “patient uprising” to MRC refusal to act , especially as this meeting followed the Gibson Inquiry and its recommendations. Going along with something rather than nothing seems to have been done instead.

    Clear from this how absolutely flaming loathe the MRC are to do anything in this field DESPITE also acknowledging they don’t get applications for biomedical Cfs research , but if they think ultimately PACE type Treatments by and large dealt with the area (ho cares about the severe minority ) then perhaps that part explains it.
     
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  10. TiredSam

    TiredSam Committee Member

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    Someone once gave me an egg-cup with exactly the same thing on it. I tend to stick with terse and sweary all day, but become more articulate as the day progresses.
    In my token effort to be more cheerful I can't help noting that at least they've booted EC off the broomstick so they can start using it for its intended purpose.
     
  11. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    So, would patients accept Simon Wessely operating on their brains now? I certainly wouldn't! The idea that psychiatry and neurology are really one and the same is utterly insane! And I wonder how many doctors who specialised in neurology, expecting to deal with physical brain diseases and problems, like tumours and strokes and brain surgery, would be keen on dealing with psychiatric problems.
     
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