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CMRC agree on a new purpose, objectives and values, which replace its previous Charter, March 2018. EC also to leave the board of the CMRC.

Discussion in 'General ME/CFS News' started by Andy, Mar 6, 2018.

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  1. Andy

    Andy Committee Member

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    https://www.actionforme.org.uk/research/uk-cfsme-collaborative/

    Screenshot of their linked file
    Screen Shot 2018-03-06 at 14.27.56.png Screen Shot 2018-03-06 at 14.28.06.png
     
  2. Simon M

    Simon M Senior Member (Voting Rights)

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    I like:

    The CMRC's purpose is to promote the discovery of the biological mechanisms that underpin CFS/M.E., which, together with clinical observation, will drive the development of targeted new treatments for this highly underserved patient population.
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    This could be exciting!

    The key message seems buried in a lot of guff:

    Following a meeting of its Executive Board in February 2018, the CMRC agreed on a new purpose, objectives and values, which replace its previous Charter.

    The CMRC's purpose is to promote the discovery of the biological mechanisms that underpin CFS/M.E., which, together with clinical observation, will drive the development of targeted new treatments for this highly underserved patient population.
    If I were going to wave a magic wand and drive BPS drivel out of the CMRC, the first thing I'd do would be to ditch that appalling charter and the next thing I'd do would be to specify that the organisation was all about biomedical research.

    Which is what just happened... :cool:

     
  4. Andy

    Andy Committee Member

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  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    I think things had to change given the paradigm shift that is underway. Membership within the "tent" was getting both strained and reduced concurrently.

    There is still a lot of woolly guff, and "biological" can be spun many ways - you only have to look at some of the recent "brain research" which is BPS with a discrete veil of applied biological terms.

    But given the fast implementation of MUS , a broad collaboration is needed.

    Actions speak louder than words - mission statements are easily spun. We will have to wait and see.
     
  6. Andy

    Andy Committee Member

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    It's undoubtedly far, far better but "biological mechanisms that underpin CFS/M.E." still leaves more wiggle room for the BPSers than I'd like.

    Also interesting that the Arthritis Research logo is there, presumably means they are full members now.
     
  7. Trish

    Trish Moderator Staff Member

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    Well it sounds good. But I'll only take them seriously if the dump Holgate and Crawley and distance themselves publicly from all BPS junk, including Crawley's current research.

    My cynical side says this is just Crawley wanting to make her MEGA project more likely to get funding.

    I hope I'm wrong.
     
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    How would you phrase it in a way that would leave no wiggle room for the BPS bunch? (I seriously wonder if that's even possible, given how much they can wiggle.)
     
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  9. Sasha

    Sasha Senior Member (Voting Rights)

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    I don't think it's realistic to expect Holgate to go, since he initiated the whole thing and seems to be it major player. I think the key thing will be whether any of the BPS crew survive the cut.

    I wouldn't mind Holgate so much if he didn't put BPS people in positions of power and influence. My impression is that he himself considers ME/CFS a biomedical thing but has been blind to the madness going on in the 'big tent'.

    But that 'big tent' has some very impressive biomedical people in it now, and if I were them, having had time to learn what's going on with PaCE and so on, I'd want a bit of reorganisation. And perhaps that's what this is.

    I'll be very interested to see how this shapes up.
     
  10. Andy

    Andy Committee Member

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    That kind of phrasing just reminds me of their whole "well, of course it starts out as a biological process but once the illness has passed it's just psychologically maintained illness behaviour". To state it to my liking it would probably need an explicit statement against the idea that ME is psychological.
     
  11. Adrian

    Adrian Administrator

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    Looks positive.
     
  12. Andy

    Andy Committee Member

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    Facebook post from AfME about it


    F*cking yes!!!! "after completing a five-year term of office as Deputy Chair, Prof Esther Crawley (Bristol University) will be standing down from this position and from the Board itself."
     
  13. Sasha

    Sasha Senior Member (Voting Rights)

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    Here's the full thing (best not to hide it in the quotes thing!):

    https://www.actionforme.org.uk/news/​cmrc-update-new-purpose,-objectives-and-values/

    CMRC update: new purpose, objectives and values
    March 06, 2018

    A new, ambitious, scientific strategy has been developed by the UK CFS/ME Research Collaborative (CMRC), of which Action for M.E. is an active Executive Board member.

    The Executive Board of the CMRC has decided that, while there is a broader need for research across all disciplines, there has continued to be a distinct lack of biomedical CFS/ME research, so it will now adopt this as its core focus.

    A number of people affected by M.E., originally members of the ME/CFS Epidemiology and Genomics Alliance, have agreed to form a CMRC Patient Reference Group, as full members of the CMRC Executive Board. With their support, the CMRC is seeking to:

    • build on the momentum created by the Institute of Medicine in the US by securing a high-level report on the illness and research in the UK, and use this to seek greater investment from policy and decision-makers
    • establish a CFS/ME Platform, similar to that of the Dementias UK Platform, to expedite and consolidate biomedical CFS/ME research.
    “We have laid some important foundations” says Prof Stephen Holgate, Chair. “But this is not enough. We need action from the highest level and the CMRC is committed to working with others to drive this. Most importantly, we need to see results now, not in another five years. I look forward to updating members at our 2018 conference in Bristol on Wednesday 19 and Thursday 20 September.”

    The Executive Board have also looked at the CMRC’s Charter and terms of reference, with a focus on how the Board and CMRC members will work together and with others. You can read the CMRC’s new purpose, objectives and values, which replace its previous Charter, on our CMRC page.

    After completing a five-year term of office as Deputy Chair, Prof Esther Crawley (Bristol University) will be standing down from this position and, due to a change in her role at the university, from the Board itself. Chair, Prof Stephen Holgate stated “We are immensely grateful to the hard work and commitment that Esther has provided to the CMRC and wish her the very best in her new role at Bristol University.”

    Prof Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) has been elected by the Board to replace Prof Crawley. New members Joanna Elson (Newcastle University), Colin Smith (Brighton University), Neil Harrison (Sussex University) and Patrick Chinnery (Oxford University) have joined the Board.

    Since its inception five years ago, the CMRC has successfully brought together significant numbers of researchers from across the UK and internationally with charities, mainstream funders and patients. With an aim to drive interest and funding in CFS/ME research, the CMRC has held four successful conferences, initiated and supported new collaborations, worked with mainstream funders and secured interest from pharma/industry, and brought researchers in from outside of the field as well as partners from charities covering overlapping illnesses. ​
     
  14. Adrian

    Adrian Administrator

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    I wouldn't read it that way. I would see it as a call to understand mechanism with the second part separating out potential treatments from mechanism understanding.
     
  15. Sasha

    Sasha Senior Member (Voting Rights)

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    "Prof Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) has been elected by the Board to replace Prof Crawley."

    Ooh! Ooh!

    He looks very impressive as a scientist and I like the things he says about patients. He was one of the speakers at the showing of Unrest at the Scottish Parliament in January and said this:



    And here he is last June, sticking a bit of a boot into GETSET in the SMC press release.
     
  16. Adrian

    Adrian Administrator

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    I think more importantly

    I think Chris Ponting looks like a good researcher and one who has been supportive of people with ME. I take this as a very positive signal.
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    More on Chris Ponting (I accidentally typed 'Christ Ponting' there, which sums up how I feel about getting a proper biomedical person in this role!):

    His profile on Edinburgh University’s site is here, and here it is, broken up for readability:

    Background
    Professor Chris Ponting is Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine.

    Chris started his research in particle physics before moving via biophysics to bioinformatics and genomics.

    Aside from one year at the National Centre for Biotechnology Information (NIH, Bethesda, MD), he pursued his research at the University of Oxford before moving to Edinburgh in 2016.

    His research group has made substantial contributions to protein science, evolutionary biology, genetics and genomics. Early in his career he discovered many important protein domain families.

    He then provided the first evolutionary analyses for mammalian genomes whilst leading protein analysis teams for the human and mouse genome sequencing projects.

    More recently, his research established that 8.2% of the human genome is constrained, and thus is likely functional.

    Chris has been on Editorial Boards of Genome Research, Genome Biology, Human Molecular Genetics, Annual Review of Genomics and Human Genetics, and Trends in Genetics, and was a Senior Editor of eLife until 2015.

    He served as Program Committee member for the CSHL Biology of Genomes, American Society of Human Genetics and Genome Science conferences.He was Head of the UK Node of ELIXIR and Chair of EMBL-EBI’s External Training Advisory Group and founded CGAT (www.cgat.org), an MRC-funded training centre.

    Professor Ponting is a Fellow of the Academy of Medical Sciences and a Member of the European Molecular Biology Organisation.​


    His research unit's page is here, and here’s a snippet, again broken up for readability:


    Research in a Nutshell

    The challenge in genomics is to identify DNA changes that predispose individuals to common disease; the challenge in genetics is to determine how these changes alter gene expression programmes; and, the challenge in cell biology is to find out how these altered programmes affect development, cells and organs.

    Our research uses cutting-edge technologies and analytical approaches in genomics, transcriptomics, and cell biology to trace the causal links from DNA change to physiological outcome.

    This research is thus positioned at the intersection between disease genomics, computational biology and experimental determination of molecular mechanism. ​

    Proper science! Proper science!
     
  18. Sasha

    Sasha Senior Member (Voting Rights)

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    This looks significant - patients on the executive board, not just shoved into a cupboard somewhere.
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  20. Andy

    Andy Committee Member

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    Interesting as well.
     

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