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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. Wonko

    Wonko Senior Member (Voting Rights)

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    Not as exhausting as yesterday at least.

    No idea what to make of it, whether any of it can be taken seriously, let alone if it's likely to be any use in my lifetime.
     
    Wonko, Apr 5, 2019
    #181
    rvallee, andypants, Ron and 3 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Vicki Whittaker Whittemore and Joe Breen of NIH seemed receptive to the idea of an online platform to facilitate sharing of information between researchers and between researchers and patients. It would be a shame to reinvent S4ME. Perhaps, even if we cannot put together a comprehensive S4ME response to NIH's call for feedback (now due on 1 May), at least some of us could mention that there is an existing platform.

    Komaroff showed M Davis' slide of the T cell expansion and seemed to be suggesting that he (Davis) had presented on it during the conference and that this is still a live idea. I was making breakfast at the time so may be confused (well, actually confusion is possible without the breakfast activity). Can anyone shed any light on that?

    Breen in particular seemed to want more information on disease mechanisms before NIH funding is used for clinical trials. I think that's a shame when ME clinicians are routinely using some treatments and believe they help. At best, a trial would validate a treatment and provide a clue to the disease mechanism. At worst, the waste of giving people useless treatments can be avoided and it will underline just how under-served this illness is in terms of effective treatments. That's still useful.
     
    Last edited: Apr 6, 2019
    Hutan, Apr 5, 2019
    #182
    adambeyoncelowe, rvallee, Kitty and 10 others like this.
  3. dreampop

    dreampop Senior Member (Voting Rights)

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    : (

    It does feel like it's always tidbits.
     
    dreampop, Apr 5, 2019
    #183
    adambeyoncelowe, andypants, Perrier and 1 other person like this.
  4. Marky

    Marky Senior Member (Voting Rights)

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    Only watched Ron`s talk, but very happy that the nanoneedle-paper will get published! Seems like something concrete enough that will get other researchers interested in investigating what might be going on. Anyone know if it will have to get replicated again, or didnt he say that theres is a 1 in a billion chance that it`s wrong? Based on the applied statistics anyway
     
    Marky, Apr 5, 2019
    #184
    MEMarge, Alvin, rvallee and 6 others like this.
  5. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Jaybee00, Apr 6, 2019
    #185
    adambeyoncelowe, shak8, rvallee and 5 others like this.
  6. Perrier

    Perrier Senior Member (Voting Rights)

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    Last edited: Apr 6, 2019
    Perrier, Apr 6, 2019
    #186
    adambeyoncelowe, MEMarge, ME/CFS Skeptic and 3 others like this.
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Journal of Extracellular Vesicles! I can’t believe I don’t have a subscription to this one yet.....getting my credit card ready.....
     
    Jaybee00, Apr 6, 2019
    #187
    adambeyoncelowe, shak8, Skycloud and 3 others like this.
  8. Roy S

    Roy S Senior Member (Voting Rights)

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    Roy S, Apr 6, 2019
    #188
    adambeyoncelowe, MEMarge, mariovitali and 11 others like this.
  9. Roy S

    Roy S Senior Member (Voting Rights)

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    Roy S, Apr 6, 2019
    #189
    adambeyoncelowe, MEMarge, mariovitali and 16 others like this.
  10. Ravn

    Ravn Senior Member (Voting Rights)

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    Did he say whether they've tested any disease controls yet?
     
    Ravn, Apr 6, 2019
    #190
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  11. Ravn

    Ravn Senior Member (Voting Rights)

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    Ok, so we're not fish, and even less fish models, but this is a fascinating report. I wonder if microglia also respond to viral "injury" in the peripheral nervous system?

    (my bolding)
     
    Ravn, Apr 6, 2019
    #191
    adambeyoncelowe, MEMarge, rvallee and 4 others like this.
  12. Andy

    Andy Committee Member

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    It's Vicky Whittemore :)

    Unfortunately I didn't see that part of the meeting, so I didn't see what they said. Was the impression given that what they were open to would be 'merely' sharing information from researchers to patients or actual two-way interaction?
     
    Andy, Apr 6, 2019
    #192
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  13. Hutan

    Hutan Moderator Staff Member

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    Oh, thanks. I got confused with Sadie Whittaker on the panel too.

    Two-way interaction.
     
    Hutan, Apr 6, 2019
    #193
    adambeyoncelowe, MEMarge, Trish and 2 others like this.
  14. Andy

    Andy Committee Member

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    Awesome, thanks. Am writing an introductory email to them now.

    However, to back my contact efforts up, if as many forum members as possible can contact the NIH and suggest the forum as a useful resource then that would be incredibly useful, thread for NIH's call for information is https://s4me.info/threads/nih-reque...-on-how-best-to-advance-me-cfs-research.8592/

    Bonus points would go to the person who went through the process of submitting a suggestion and also wrote up some guidance on the process for other forum members. :)
     
    Andy, Apr 6, 2019
    #194
    adambeyoncelowe, mariovitali, NelliePledge and 9 others like this.
  15. Hutan

    Hutan Moderator Staff Member

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    Excellent, Andy. It's a shame we have to wait a week or two until the videos of the conference presentations and discussions are available.
     
    Hutan, Apr 6, 2019
    #195
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  16. andypants

    andypants Senior Member (Voting Rights)

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    Breen, was that the guy who was chewing gum like his life depended on it the whole time, even when speaking?
     
    andypants, Apr 6, 2019
    #196
    adambeyoncelowe, ME/CFS Skeptic, Trish and 1 other person like this.
  17. Andy

    Andy Committee Member

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    Sent. Now get your suggestions sent in folks! :)
     
    Andy, Apr 6, 2019
    #197
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  18. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Sunshine3, Apr 6, 2019
    #198
    Binkie4, andypants and Skycloud like this.
  19. mariovitali

    mariovitali Senior Member (Voting Rights)

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    Does anyone know if the method used by Ron Davis in measuring cell impedance is the same as ECIS shown below?


     
    Last edited: Apr 6, 2019
    mariovitali, Apr 6, 2019
    #199
    adambeyoncelowe, Webdog, Simon M and 3 others like this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

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    Then this calls for
    [​IMG]
     
    rvallee, Apr 6, 2019
    #200
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