Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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CFSAC Meeting Scheduled for January 13, 2015

Discussion in 'Action Alerts and Advocacy' started by Wally, Dec 18, 2014.

  1. Wally

    Wally Senior Member

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  2. Nielk

    Nielk

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    A two hour CFSAC meeting in January? This is odd. I bet this has to do with the "rolling out" of the IOM and P2P.
     
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  3. Wally

    Wally Senior Member

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    For a two hour meeting, I wonder how much time will be allowed for public comment????:thumbdown:
     
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  4. Ember

    Ember Senior Member

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    The purpose of the meeting is to finalize any comment that the Committee might want to submit concerning the imminent Draft Report.
     
    Liz Willow, beaker, Gemini and 3 others like this.
  5. Ember

    Ember Senior Member

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    Meeting of the Chronic Fatigue Syndrome Advisory Committee
     
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  6. Hope123

    Hope123 Senior Member

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    There is concern that comments submitted to the NIH P2P panel will not be retained in the public record. That is, we will not be able to read the comments of others nor will the public (e.g. media, etc.) have access to those comments in the future.

    Thus, I encourage everyone to submit a copy of what they plan to send to NIH P2P to CFSAC as well at cfsac@hhs.gov since whatever is sent to CFSAC, by the laws of the Federal Advisory Committee Act, have to be available publicly.
     
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  7. Sasha

    Sasha Fine, thank you

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    UK
    I think you should repost that on the main P2P thread, if you haven't already. :)
     
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  8. Wally

    Wally Senior Member

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    See, Reply #558 at http://forums.phoenixrising.me/index.php?threads/the-p2p-draft-report-is-out.34480/page-28 for the current status of the request to the Office of Disease Prevention (ODP) for clarification on whether or not public comments to the P2P Draft Report and the P2P Workshop will be retained and available for public review.
     
  9. Nielk

    Nielk

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    The agenda for the January 13thCFSAC webinar is attached and below.



    Agenda

    CFSAC 2015 Conference Call

    1:00 p.m. to 3:00 p.m. (ET)

    January 13, 2015


    1:00 p.m.

    Call to Order

    Roll Call

    Opening Remarks



    Webinar Logistics

    Susan M. Levine, M.D.

    Chair



    Barbara F. James, M.P.H.

    Senior Public Health Advisor

    1:15 p.m.

    Public Comment


    1:45 p.m.


    Pathways to Prevention (P2P) Working Group Presentation on Comments for P2P Report

    Donna M. Pearson

    Chair

    2:05 p.m.

    Committee Discussion/Decision




    2:50 p.m.

    Recap of Final Decisions and Next Steps



    Susan M. Levine, M.D.

    Chair

    3:00 pm

    Adjourn
     
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  10. Nielk

    Nielk

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    OS OPHS CFSAC (HHS/OPHS)

    To CFSAC-L@LIST.NIH.GOV

    Jan 9 at 4:22 PM

    Call-in Information for Upcoming CFSAC Teleconference

    Tuesday, January 13, 2015 1:00 PM - 3:00 PM ET

    1-888-928-9122

    Participant passcode: 9898494

    For security reasons, the passcode will be required to join the conference.
    Restrictions may exist when accessing toll free numbers using a mobile telephone.

    Thank you,
     
  11. Nielk

    Nielk

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    Jeannette Burmeister sent the following e-mail to CFSAC: http://forums.phoenixrising.me/inde...working-group-p2p-document.34896/#post-544827

     
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  12. Anne

    Anne Senior Member

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    Will anybody be reporting from the meeting? (curious...)
     
  13. Wally

    Wally Senior Member

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    Last edited: Jan 13, 2015
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  14. Denise

    Denise Senior Member

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    The meeting is just a teleconference.
    I don't know if people will be tweeting.
    One concern is that the committee will be discussing a document that none of the rest of us can see as there is no visual for this meeting. Makes it difficult to follow changes and track what they agree to.
     
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  15. Nielk

    Nielk

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    Starting in 3 mins.

    1-888-928-9122

    Participant passcode: 9898494
     
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  16. GalaxiiGrl

    GalaxiiGrl

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    USA
    A live operator came on the line to ask for the passcode and for my first and last name with correct spelling.
     
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  17. Nielk

    Nielk

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    5 mins. late so far.
     
  18. Nielk

    Nielk

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    Just starting....roll call.
     
  19. Nielk

    Nielk

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    They named about 11 people who are on the P2P working group:
    Levine, Collier, Cook, Fletcher, Pearson, Friedman, Perry, Friedberg and 3 more
     
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  20. Jessrose21

    Jessrose21

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    Farmington, NY
    They can't hear us, right?
     

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