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UK CMRC 2018 Conference held September 19 & 20 at Bristol

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

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    ...according to today's announcement about the CMRC's new purpose, objectives and values:

    https://www.s4me.info/threads/cmrc-...-leave-the-board-of-the-cmrc.2809/#post-50325

    Should be interesting. :)

    Moderator note:

    To enable discussion of each of the talks at the Conference, separate threads have been created for each talk.

    For those who prefer to read about the Conference and all the talks, the 24 page MEA report of the conference is here.

    Prof Stephen Holgate CMRC Chair. 15 minutes.

    Prof Alain Moreau 'Identification of post-exertional dysregulated circulating microRNAs in ME/CFS pathogenesis'. 39 minutes.

    Dr Nina Muirhead 'The views of a Doctor with ME on educating Doctors and medical students about ME'. 21 minutes.

    Rachel Hunter 'The economic impact of CFS/ME'. 22 minutes.

    Dr Eliana Lacerda 'European collaboration in ME/CFS: The EUROMENE network'. 21 minutes.

    Rachel French 'CFS/ME, IBS and Fibromyalgia: Chance association or common pathway'. 15 minutes.

    Prof Frances Williams 'Twins and the study of chronic pain genetics'. 24 minutes.

    Dr Luis Nacul 'The UK ME/CFS Biobank: Accelerating global research in ME/CFS'. 35 minutes.

    David Tuller Q & A Session. 11 minutes.

    Dr Neil Harrison 'MRC-funded update: Imaging exercise-induced Post-Exertional Malaise in ME/CFS. 26 minutes.

    Prof Cathie Sudlow, Chief Scientist, UK Biobank. Anne Faulkner Memorial Lecture: 'Big health data and open science: a powerful combination to generate new understanding of disease'. 54 minutes.

    Dr Elisa Oltra 'Differential microRNA profiles in PBMCs and plasma EVs of severely affected ME/CFS patients'. 33 minutes.

    Prof Carmine Pariante 'MRC Funded Update: Persistent fatigue induced by interferon-alpha: a novel, inflammation-based, proxy model of Chronic Fatigue Syndrome'. 23 minutes.
     
    Last edited by a moderator: Oct 9, 2018
    mariovitali, Jan, MEMarge and 9 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Will they finally get around to inviting @dave30th for the keynote?

    "David Tuller: How you messed things up (part 1)"
     
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Seriously, @dave30th, why not attend?
     
  4. Adrian

    Adrian Administrator

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    I think with the latest changes it may be interesting to attend although in the past non-researcher sessions were limited. But even if they have a shorter session that may prove interesting now they are having more patient involvement on the board.

    There may be important lessons from PACE (in terms of methodological failures) etc but I suspect good scientists wouldn't fall for such bad methodology.
     
  5. Sasha

    Sasha Senior Member (Voting Rights)

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    I don't see why patients shouldn't attend all the presentations.
     
  6. Adrian

    Adrian Administrator

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    So IiME have a closed session before the main conference for researchers to exchange early results. Also I think it would be good to have smaller sessions between researchers from different fields to try to build research proposals across the fields.

    But yes it would be good to be open for the talks etc.
     
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    I agree it's good to have some sessions closed to protect early results and foster networking but otherwise, I'd like to see patients free to attend the talks.
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Bristol again...........watch out for a sinister figure in dark glasses:emoji_bug:
     
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  9. Awol

    Awol Senior Member (Voting Rights)

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    The IiME Research closed session spans two days prior to the one day public conference (plus the opportunities at the evening dinners) and this year there will be an extra closed day specifically for Early Career Researchers. Maybe the CMRC conference events will expand on similar lines.
     
  10. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Last year's second day of CMRC was closed initially to associate members, ie non researchers/medics, but they changed their minds nearer the time and opened the second day as well.
    I had hoped to go, but my back was very dodgy and then my son was starting Uni, the foll w/e.

    I have put it in the diary for this year.

    I see no reason why DT should not attend

    ETA To make sense!
     
    Last edited: Mar 8, 2018
  11. Alvin

    Alvin Senior Member (Voting Rights)

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    Patients giving perspective and guiding research towards the truth, thats too much to ask in 2017 :emoji_face_palm:

    An echo chamber is what they want and what they will have (and i hope to be proven wrong)
     
    adambeyoncelowe likes this.
  12. dave30th

    dave30th Senior Member (Voting Rights)

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    Yes, I'm going to think about going this year. Last year it really wasn't an option.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think conference sessions fall naturally into three types. The first is a workshop session where numbers are deliberately limited so that active scientists can interact in the most direct way possible. These sessions tend to be by invitation and are often fully funded by the meeting organisers. The IiME colloquia are of this type.

    The second type is the standard one for academic societies, where sessions are open to anyone who pays a registration fee. The assumption is that delegates will want presentations to be in a practical scientific format and will accept that they are expected to be up to speed on technical language and concepts. Most delegates will be professional researchers but there is no reason why they have to be. They just have to accept that the presentation is tailored to that audience.

    The third type are sessions that are deliberately aimed at a wider audience that might be patients or general public. Showcase meetings at University Graduation Days or suchlike can be like this. In this situation the speakers are expected to present material in a way that is accessible to anyone who is reasonably intelligent and interested.

    IiME have traditionally mixed type 1 with type 3 and that seems an excellent formula for a charity.

    CMRC should be following the type 2 model, as for a learned society. People have to pay to go to CMRC. They are not invited. And so in general there is no type 1 workshop atmosphere. Numbers may be limited by room size but they are not limited specifically for the purpose of close dialogue. In this context I can see no legitimacy for limiting attendance to professionals of particular sorts. CMRC sessions should be open to patients as long as the patients are ready to listen to scientific language. Only an exclusive club would do otherwise.

    I agree that CMRC might consider some type I sessions, which in society meetings are often put under the heading of 'special interest groups'. CMRC is not in the business of type 3 public talks because it is not providing a service to charity donors. It should focus on type 2 presentations but they should be open to anyone prepared to pay a registration fee and listen attentively.
     
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  14. Awol

    Awol Senior Member (Voting Rights)

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    Thanks for the good points and the clarity @Jonathan Edwards. I seem to remember from last year (perhaps from a blog by @dave30th but I could be wrong) that the status of CMRC was a bit fuzzy, and some charities are actively involved with CMRC and are members of the Executive Board. It's also clear to me that CMRC notes successful outcomes of the evolution of the IiMER conference and colloquium events since they began in 2006, so I wouldn't be surprised if they continue to emulate and to follow this lead, but I take on board the differences you point out.
     
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  15. Andy

    Andy Committee Member

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    https://www.eventbee.com/v/cmrc2018#/tickets
     
  16. Trish

    Trish Moderator Staff Member

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    Looks like a vast improvement on past conferences.

    I wonder whether well know Bristolians Esther Crawley and Hazel O'Dowd will attend. They might learn something.
     
  17. Andy

    Andy Committee Member

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    https://www.actionforme.org.uk/news/registration-now-open-for-2018-cmrc-conference
     
  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Yes and don’t forget all their BACME cronies
     
  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Was EC not the only speaker not to have their presentation on YouTube last year at CMRC? I could well be wrong as i was only dipping a toe into ME political waters then

    I seem to remember Dr Rowe' s POTS lecture highlighting the huge gulf in paediatric knowledge. Up til then children did not have POTS...
     
  20. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    he's not on the list for CMRC but I see Dr Montoya is in Belfast a day or so before so maybe he will be in Bristol again
     
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