Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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CMRC 2017 conference update: Look who’s flying-in next month!

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 18, 2017.

  1. Cinders66

    Cinders66 Senior Member

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    Hey that's AFMEs years work you're dissing
     
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  2. Cinders66

    Cinders66 Senior Member

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    I do t think arthritis and eds would have CFS sections at their conferences ? We just don't have enough ME research happening in uk to fill up a conference and the field shouldn't still be in this type of vague infancy. What's happening in other countries might be Driving some sort of progress, what's happening in uk isn't.
     
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  3. Joh

    Joh Inactivist

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  4. Joh

    Joh Inactivist

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  5. Joh

    Joh Inactivist

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  6. Joh

    Joh Inactivist

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    I wonder if the challenges include anti-science patient groups? Don't know him, apologies if he's one of the good guys. Still might be more worthwhile to talk about actual research instead of why it's not happening.
     
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  7. NelliePledge

    NelliePledge plodder

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    well we will get the video in the next few days - Friday or Monday maybe - so you will be able to check it out :)
     
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  8. Esther12

    Esther12 Senior Member

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    It looks like there were people speaking there who were not on the schedule. Or maybe they were just making comments from the audience?
     
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  9. Joh

    Joh Inactivist

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    Honestly? I'm in bed, waiting for research and they discuss generally how research is done ("Have the ability to address the question appropriately". "Be able to measure the right thing"). And come up with these self-evident points as news. Isn't that what universities are for? I was originally a teacher and the following is not cynicism, I am honestly convinced that these points could be brainstormed by school kids.
     
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  10. Valentijn

    Valentijn The Diabolic Logic

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    To be fair, there are likely some idiot BPSers in the audience who haven't discovered the importance of objective outcomes, recruiting patients with the mandatory disease symptoms, or that the patients matter more than putting another entry on their CV/résumé.
     
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  11. AndyPR

    AndyPR Tired Sam ate all the cookies!

    If the CMRC don't realise how embarrassing it is for her (Julia Newton?) to feel the need to point these things out to those attending then we have no hope of any progress from them. Did anybody feel the need for such basic education at the IiME conference this year? I highly doubt it.
     
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  12. Joh

    Joh Inactivist

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    That's exactly the same question I asked myself when seeing these tweets - Could I imagine slides like this at the Invest in ME conference? No. I ordered the DVD and the two days were so packed with exiting research. No time to discuss what skills researchers need to do their job.
     
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  13. Joh

    Joh Inactivist

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    Another meta-talk about the theory of research (ironically called "practical session").
    Let me guess what harms research? Anti-science activists, militant patients?
    Isn't it sad that hearing "collaboration" from these circles makes me afraid? Sounds like MEGA and "multi-discipline approach" (aka CBT etc.).
     
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  14. Valentijn

    Valentijn The Diabolic Logic

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    I'd expect that's exactly what it's about. With extra spin, to make MEGA sound awesome and make patients opposed to it sound irrational. If AfME had a purpose, it wouldn't be fit for it :meh:
     
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  15. Cinders66

    Cinders66 Senior Member

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    Could we have a research discussion about the harm of the name CFS, weak criteria still used, the CBT/GET narrative and irresponsible putting of it in the media, the fact GP and NICE advisors /organisations are still putting CFS under mental heajth, the damage to those with complex ME having their illness reduced to fatigue even by people who attend the conference and run clinics, the lack of ME education vs CFS and both getting lost in MUS & FND and the fact that the state funders refuse to ring fence and have funded behavioural vs biomedical research to a ratio of approx 3:1 ?

    Nah, I thought not
     
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  16. Esther12

    Esther12 Senior Member

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    Why would Sonya think she has anything to contribute on "What helps collaboration? And what harms it?" ?!

    She's clearly terrible at this. What 'collaboration' in research has she been involved in that has done anything good for patients? "The key thing for collaboration is to do whatever Esther Crawley tells you."

    It's mind-blowing that she thinks she is suited to giving that talk.
     
    Last edited: Sep 14, 2017
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  17. Cheshire

    Cheshire Senior Member

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    Given how Holgate answered patients' concerns, this could also be in the Joke of the Day thread:
     
    Last edited: Sep 14, 2017
  18. A.B.

    A.B. Senior Member

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    Especially the abusers and their victims. They need to learn how to like each other and be one big happy family. (satire)
     
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  19. slysaint

    slysaint Senior Member

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    W. Sussex UK


    Anyone told them this is what IiME are doing with their centre of excellence?
     
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  20. Esther12

    Esther12 Senior Member

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    Edit: Actually, looks like discussion of the talk is happening in the thread on the videos: http://forums.phoenixrising.me/inde...-the-cmrc-conference.54327/page-2#post-903115

    The Holgate talk was so cringe-worthy. Years ago, I hoped he was trying to play the system for the benefit of patients. Now I think that he is the system, he respects the systems values, and he's a disaster for us.

    It seems pretty clear that all the CMRC has done is helped strengthen the position of Crawley and helped others in the UK medical establishment pretend that there's some worthwhile body in place for helping 'bring together' patients and researchers in this contentious area. How can anyone, other that Crawley/White/Wessely/etc think that this is a good idea?

    The only remotely cheering thing from his talk was the news that MEGA didn't get funded.

    The link with Arthritis Research UK's 'pain' initiative looks terrible too.

    This is what exciting research they're funding:

    https://www.arthritisresearchuk.org...-and-arthritis/pain-report/pain-research.aspx

    Also, there was that time when the Research Councils website reported Arthritis Research UK were giving funding to PACE, only for them to say that was not the case, and then nothing came of it:

    Here's the Royal Scoiety meeting on fatigue Holgate mentioned: https://royalsociety.org/science-events-and-lectures/2017/09/neurobiology-fatigue/#

    Session 1 is chaired by Trudie Chalder.

    Then we have the CMRC's Mark Edwards speaking:

    Apparently the 'visionary' Mark Edwards has suggested that the CMRC reconsider its purpose after this years conference.

    Please God... don't let anything come of the meeting with Vicky Whittemore from NIH. The last thing we need is for the mentality of the CMRC to contaminate the USA.

    Holgate's talk was more positive spin on bad developments. I think it's more likely that he's just mindlessly deferential to authority rather than acting out on any sinister intentions, but that doesn't make it any better for us.
     
    Last edited: Sep 14, 2017
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