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NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

Discussion in 'General ME/CFS news' started by Andy, Jan 18, 2019.

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  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Apr 3, 2019
    #21
    inox, Hutan, Binkie4 and 21 others like this.
  2. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Brilliant that we can watch in our own time afterwards. Thanks @Andy
     
    Sunshine3, Apr 3, 2019
    #22
    MEMarge and Andy like this.
  3. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    Merged thread

    This must have been posted elsewhere, but I didn't see it. The NIH (USA gov't agency which directs most health research in the country) has two days of presentations on the topic, Thursday (tomorrow) and Friday 4/4 and 4/5, to be available via streaming video cast. I'm not aware of any audience participation.

    Here's the agenda:
    https://custom.cvent.com/536726184E...35e11fdf/572de4fe15dd4c08a515a089094bc343.pdf

    Here's the placemark for the videocast, which is scheduled to begin Thurs 4/4, 9am Eastern Daylight Time, which is ummm GMT-4.
    https://videocast.nih.gov/summary.asp?live=31636&bhcp=1
     
    Last edited by a moderator: Apr 3, 2019
    Sisyphus, Apr 3, 2019
    #23
    ukxmrv, Andy, Trish and 5 others like this.
  4. Sasha

    Sasha Senior Member (Voting Rights)

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    Is there any indication of whether the talks will be posted online later?
     
    Sasha, Apr 4, 2019
    #24
    Trish likes this.
  5. Andy

    Andy Committee Member

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    "Please note that the meeting archive will be available on the NIH Videocast website approximately a week following the close of the meeting and then available to view forever.", from my post upthread which was from an email that the organisers sent out.
     
    Andy, Apr 4, 2019
    #25
    Lisa108, mango, Simone and 3 others like this.
  6. Trish

    Trish Moderator Staff Member

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    Looks like it's getting ready to start.
    Edit - not a good start. Watched the first few minutes, auditorium looks nearly empty. Then screen went blank, no sound, access denied.
     
    Last edited: Apr 4, 2019
    Trish, Apr 4, 2019
    #26
    Hutan, Andy and Inara like this.
  7. Inara

    Inara Senior Member (Voting Rights)

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    I don't see anything, too.
     
    Inara, Apr 4, 2019
    #27
    Andy and Trish like this.
  8. Trish

    Trish Moderator Staff Member

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    It's working now.
     
    Trish, Apr 4, 2019
    #28
    Andy likes this.
  9. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    Worked for a few minutes, for me, then stopped cold. Tried two different browsers. When I refresh it brings up a shot that seems current but there's no sound or playback.
     
    Three Chord Monty, Apr 4, 2019
    #29
    Inara and Andy like this.
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Kalliope, Apr 4, 2019
    #30
    inox, Inara, Trish and 2 others like this.
  11. Denise

    Denise Senior Member (Voting Rights)

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    It reminds me of the effects of ME ..... start up, work a little bit, then dead stop.
    [ETA - and during the dead stop (no livestream), it's like a blackout (PEM - patient not visible to the world) .]
     
    Last edited: Apr 4, 2019
    Denise, Apr 4, 2019
    #31
    AliceLily, Lisa108, mango and 7 others like this.
  12. Denise

    Denise Senior Member (Voting Rights)

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    Denise, Apr 4, 2019
    #32
    Hutan, Trish, Ron and 1 other person like this.
  13. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    Chrome on my phone seems to be able to run it. Thanks!
     
    Three Chord Monty, Apr 4, 2019
    #33
    ukxmrv, Trish and Andy like this.
  14. Trish

    Trish Moderator Staff Member

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    Watching on Chrome. Mostly OK but stops quite .often, so I'm missing bits.
    Dr Bateman was good on clinical experience, case studies and discussing the history and purposes of the different definitions.

    Naviaux now.
     
    Trish, Apr 4, 2019
    #34
    Hutan, MEMarge, Inara and 4 others like this.
  15. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm watching as well, Dr Bateman was good, Dr Naviaux so far is not wrong but is essentially arguing philosophy meets medicine. And he is now confirming that by quoting Greek gods.
     
    Alvin, Apr 4, 2019
    #35
    Chezboo, Hutan, Perrier and 2 others like this.
  16. Cheshire

    Cheshire Senior Member (Voting Rights)

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    I find it very confusing and not very convincing so far.
     
    Cheshire, Apr 4, 2019
    #36
    Hutan, Perrier, Aroa and 1 other person like this.
  17. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't agree with some of what he says and some of it is irrelevant.
    He makes some good points but some have alternate just as plausible explanations.
    In the end i think his work on metabolomics will be more useful then the philosophical implications of medical research or theories about how things work
     
    Alvin, Apr 4, 2019
    #37
    Sisyphus, Milo, Perrier and 4 others like this.
  18. Trish

    Trish Moderator Staff Member

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    I think I've heard or read most of what Dr Naviaux said from him before, but I found it interesting. I don't know enough to know whether his theories are likely to be useful.

    Half hour break now.

    The auditorium still looks only about a quarter full or less which is disappointing.
     
    Trish, Apr 4, 2019
    #38
    Simone, Perrier, Aroa and 2 others like this.
  19. Alvin

    Alvin Senior Member (Voting Rights)

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    Nice, i heard 15 mins then forgot the 1/2 hour part.

    Indeed.
    Though the real issue is are the NIH ready to open the purse strings or are they just stringing us along yet again?
     
    Alvin, Apr 4, 2019
    #39
    rvallee, Perrier and Medfeb like this.
  20. Denise

    Denise Senior Member (Voting Rights)

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    Especially since they said the space was oversubscribed.

    I wonder how many people were at the young/new investigator meeting yesterday and what will come of that....
     
    Denise, Apr 4, 2019
    #40
    Simone, Hutan, MEMarge and 3 others like this.
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