Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Link to videos of talks from the CMRC conference

Discussion in 'General ME/CFS News' started by Countrygirl, Sep 14, 2017.

  1. Countrygirl

    Countrygirl ME is not MUS

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    https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg

    Here is the link to the talks held on day one of the CMRC conference 13th Sept 2017.
    EDITED to say it now has a few of the DAY TWO conferences.

    Interesting that Dr Crawley clearly didn't give permission for her talk to be added.
     
    Last edited: Sep 14, 2017
  2. Cinders66

    Cinders66 Senior Member

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    Holgates talk was depressing, he basically part admitted the CMRC hasn't achieved much, Newton and parry are leaving CMRC, MRC lady is leaving (some replacements mentioned) and MEGA was NOT funded but they're still pursuing it. He, when ending, said worldwide research had been interesting but I think UK is limping behind now with the unhelpul, inaccurate way CFS is framed and regarded in UK medical world and the lack of central direction/intervention to get things properly recognised and stepped up a gear as has happened in USA.
     
  3. user9876

    user9876 Senior Member

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    I wonder if that is a positive. He should be realizing the organization he set up is not working. Maybe that would allow something else to happen.
     
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  4. Cinders66

    Cinders66 Senior Member

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    We just don't have time for this. He was using the five year marker but he actually set up the ME expert group doing similar things, except the international conference, since 2007. One limp effort based on a vague CFS with no little state action /funding, replaced by another. He gave no indication that it was folding as a thing or that anything else was going to happen. We saw a big MRC lady leaving applause, what for? Letting us use their building and part funding a conference? Wowzers.
    One telling thing was that when he wrote to a government ? science ? organisation to get some political action/ interest they said they weren't interested in helping. Holgates seems to think general fatigue /pain stuff is where some action will be but that isn't ME.
     
  5. Cheshire

    Cheshire Senior Member

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    Just watched this presentation:


    Gina Wall is a physiotherapist from the Royal Free Hospital Fatigue Service.
    She said the patients with hypermobility may be a sub group of CFS or maybe they should be considered a separate group.

    Agreeing there was some kind of physiological basis for this, she then said patient education with a biopsychosocial frame was essential to help patients understand what was happening to them and prevent them from freaking out too much, which could lead to sensitisation...
     
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  6. slysaint

    slysaint Senior Member

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    Talking about MEGA:
    "Esther Crawley did a stunning job...............I want to thank you Esther.............this is not the end of MEGA"
    :vomit:
     
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  7. lilpink

    lilpink Senior Member

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  8. lilpink

    lilpink Senior Member

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    Oh good grief! It's moronic opinions like that which 'sensitise' me!
     
  9. lilpink

    lilpink Senior Member

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    I suppose it depends on how one defines 'stunning'? The BPS school and hangers on seem to have an alternative dictionary where most assumed meanings have a very different definition. Bit like the definitions for 'service evaluation' vis-a-vis 'research'. Bit like using paediatric REC numbers for adult published papers. Laws unto themselves.
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    Well to be fair she has left us completely stunned many times. In fact every time we thought she couldn't stoop any lower, or be even more conniving, devious or fatuous, she has plumbed new depths and stunned us once again.
     
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  11. NelliePledge

    NelliePledge plodder

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    As we sing at the football* when the opposing fans start leaving early because they are losing

    Time to go, time to go, time to go-o-o-o-oh, (The less polite add a coarse expletive at the end.....):eek::wide-eyed:

    (*Proper football as played around the world)

    nb sorry for flippancy
     
    Last edited: Sep 14, 2017
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  12. Cinders66

    Cinders66 Senior Member

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    The USA study looked very impressive, so many layers and everything thrown at it although a small number of people. I've only watched that, james mcCullagh and holgates so far

    I was, as someone severe, still feeling NIH officials don't get it. It looked so lame for him to suggest that a letter from their own and a congresswoman made NIH suddenly look at an illness there'd not only ignored but not bothered to learn much about for twenty years. He also said there was many ways to study this but he chose one closest to his expertise, fair enough, but he decided not to do an advanced me CFS study concurrently which I woukd have liked (and they could have done), given his cohort for his study (due to its demands , hospital stats, batteries of tests including exercise) are going to be the more or even most highest function and severe ME really needs a research effort of its own.
     
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  13. slysaint

    slysaint Senior Member

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    Just watched the James McCullagh presentation. Metabolomics; showing marked differences. Also did quickly talk about the comparison they did before and after GET but got the impression he didn't dwell on it for obvious reasons.
     
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  14. Cinders66

    Cinders66 Senior Member

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    That was a good presentation and research, although I didn't understand if post GET the changes were moving towards normal or abnormal and whether the GET patients felt helped or harmed.
     
  15. slysaint

    slysaint Senior Member

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    MEA just seem to be retweeting AfMEs tweets; would have been nice to see their assessment of presentations.
    https://twitter.com/meassociation?lang=en

    Watched the Dr Linda van Campen presentation. Didn't really understand what she was getting at until the very end when she said "CBF decline is NOT caused by deconditioning".
     
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  16. A.B.

    A.B. Senior Member

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    Most metabolites decreased further with GET, but since there was no control it's hard to draw conclusions. In my opinion it's hard to argue that the low metabolites in the illness are a good thing and that further decrease represents improvement.

    He also talked about glycolysis, Krebs cycle and pentose phosphate pathways before and after GET, mentioning a "depletion in central metabolism after GET".

    The other metabolomics findings seemed to be somewhat in contradiction to other published metabolomics research: increased ATP, increased glycolysis and Krebs cycle, decreased amino acids used as fuel for Krebs cycle. At least that's what I understood. Maybe these are actually all in agreement but without knowing the details it's hard to tell. Their results do also suggest widespread hypometabolism which seems to be a very consistent finding.
     
    Last edited: Sep 14, 2017
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  17. Cheshire

    Cheshire Senior Member

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    Yes, he was somewhat elusive about the changes after GET. But he said they only got the results one week prior to the lecture and were still in the process of analysing them.

    Pretty interesting though.
     
  18. A.B.

    A.B. Senior Member

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    I have added an edit with more info. GET seems to result in further depletion of energy production pathways.
     
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  19. lilpink

    lilpink Senior Member

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    Very true..that must be what they meant ;) :thumbsup::rofl:
     
  20. A.B.

    A.B. Senior Member

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    Some more thoughts on this. We knew from the PEM literature that exertion decreases physical function on the next day. This seems to usually be a short term effect. This new work raises the question whether GET can lead to long term decrease of physical function. How long has it been since these patients did GET?
     
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