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Telebriefing by Trans-NIH ME/CFS Working Group on March 7, 3-4 PM Eastern Time

Discussion in 'Advocacy Action Alerts' started by ahimsa, Feb 23, 2018.

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  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I got some email today from the The Trans-NIH ME/CFS Working Group.

    (I guess I signed up for their mailing list but had forgotten all about it)

    ===== start of mail =====
    We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on March 7, 2018, 3:00 until 4:00 pm ET. If you will be calling from the U.S., please use the following dial-in information for the telebriefing.

    Dial-in: 866-844-9416
    Participant passcode: 4042892

    If you will be calling from another country, please see the attached chart for your country’s access information.

    Please remember to register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to participate in the call.

    Thank you in advance for your participation and we look forward to an engaging, thoughtful and productive conversation.

    Regards,

    The Trans-NIH ME/CFS Working Group
    ===== end of mail ========


    There was an attached file (MS Word format, .docx) with phone numbers which I have converted to a PDF file and uploaded. For some reason I had trouble uploading the original file.
     

    Attached Files:

    MEMarge, Joh, Jan and 14 others like this.
  2. Milo

    Milo Senior Member (Voting Rights)

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    Reminder that this telebriefing is today! Check out your time zone.
     
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  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Do they post recordings of these things later?
     
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  4. Sasha

    Sasha Senior Member (Voting Rights)

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    A little bump for this - I think it's on in 30 minutes. Anyone going to listen?
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    missed it :(
     
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    I listened but don't recall anything especially earth-shattering (but I have the concentration of a pingpong ball).
     
  7. Webdog

    Webdog Senior Member (Voting Rights)

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    Made it through about 45 minutes before my brain gave out. Lipkin emphasized he thinks this is many many diseases, making an analogy with cancer.

    One of these days, the NIH will stop calling it "chronic fatigue".
     
    Sly Saint, MEMarge, ahimsa and 8 others like this.
  8. Milo

    Milo Senior Member (Voting Rights)

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    Lipkin said there is a paper in the work, that he couldn’t discuss its content otherwise he wouldn’t be able to publish it.
     
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  9. Forbin

    Forbin Senior Member (Voting Rights)

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    Are calls like this recorded and archived by the NIH? I seem to recall hearing one that way, but I may be mistaken.


    ETA:

    I answered my own question. It looks like a transcript and recording will eventually be posted at the link below. I'm not sure how long it takes, though it looks like it took a couple of weeks last time.

    https://www.nih.gov/mecfs/events
     
    Last edited: Mar 9, 2018
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  10. Andy

    Andy Committee Member & Outreach

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  11. Forbin

    Forbin Senior Member (Voting Rights)

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    In the teleconference, Dr. Lipkin said this:

    [From the NIH transcript]
    By "the findings that came out of UC San Diego" I assume he's referring to Dr. Naviaux's metabolomics study that resulted in this paper in 2016. Metabolic features of chronic fatigue syndrome
     
    Simon M, Hutan, Aroa and 2 others like this.

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