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Dec 13-14, 2017 | US Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting

Discussion in 'General ME/CFS News' started by Sasha, Nov 25, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Edit: Deadline for registering to submit a comment is Monday, 27 Nov.

    Code:
    https://twitter.com/TomKindlon/status/934257699763695618


    Read the whole thing at: https://s3.amazonaws.com/public-inspection.federalregister.gov/2017-25550.pdf
     
    Last edited: Nov 25, 2017
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  2. Denise

    Denise Established Member (Voting Rights)

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    The publication date for the Federal Register notice is 27 Nov.
    and the deadline for requesting public comment is also the 27th of November.
    At the last CFSAC meeting the Standard Operating Procedures were discussed. The committee decided that
    • When possible, the Supplementary Information in the Federal Register Notice of Meeting for CFSAC should identify key topics to be discussed, along with an invitation to the public to address their comment on those topics at their discretion. In the event key topics have not been included in the Federal Register Notice, a CFSAC listserv notice will be sent at least two weeks prior to the deadline for submission of comments.
    I guess the lack of topics in the Fed. Reg. notice means that the topics will sent via the Listserv no later than Wednesday the 29th.
     
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  3. Denise

    Denise Established Member (Voting Rights)

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  4. Sasha

    Sasha Senior Member (Voting Rights)

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    I didn't realise until you linked to that the deadline to sign up to make a public comment is this Monday! I've edited my first post and the thread title accordingly.

    Disgraceful lack of notice.
     
  5. Denise

    Denise Established Member (Voting Rights)

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    CFSAC just sent this out:

    Good morning, below is the link to the Federal Register Notice (FRN) announcing the upcoming in person CFSAC meeting.

    Due to a delay of a few days in publishing the FRN, we will be taking public comments through next Monday, December 4th.

    A final agenda will be posted on the CFSAC website this week.

    We look forward to your public comments.

    Thank you.

    https://www.gpo.gov/fdsys/pkg/FR-2017-11-27/pdf/2017-25549.pdf

    I am still unclear if taking public comment til 4 Dec means they are accepting requests for public comment time slots or accepting written comment until 4 Dec.
     
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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks, @Denise - I've updated the thread title.
     
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  7. Denise

    Denise Established Member (Voting Rights)

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    Another update from CFSAC

    "Participating in person at the upcoming CFSAC meeting



    We will be holding an in person meeting December 13-14, at the U.S. Department of Health & Human Services headquarters. We are located at:



    Hubert H. Humphrey Building

    200 Independence Avenue, S.W.
    Washington, D.C. 20201



    If you would like to participate in person, please let us know and we will add your name to a list of individuals attending in person. You will need to show a state or Federal government issued I.D. with your photograph in order to enter the building and be escorted to the meeting room.



    If you would like to participate in person but you are not a U.S. citizen, please email the CFSAC mailbox. You will have to be properly vetted prior to entering the building. We’ll need specific information from you before or on December 5th at the latest."



    [Still no word on whether the meeting is being livestreamed or who the current CFSAC chair is]
     
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  8. Denise

    Denise Established Member (Voting Rights)

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    Yet another update from CFSAC (via personal email)
    The meeting will be livestreamed and recorded/posted for later viewing.
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks for that Denise.
     
  10. Denise

    Denise Established Member (Voting Rights)

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  11. Denise

    Denise Established Member (Voting Rights)

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    In-person attendees must register in advance by sending their name(e) to
    cfsac@hhs.gov


    Sorry for lots of posts with dribs and drabs of important info but that is how info is being received (in dribs and drabs).
     
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  12. Sasha

    Sasha Senior Member (Voting Rights)

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    Details of the event are out now:

    December 13-14, 2017 CFSAC Meeting (In Person)

    This Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting will take place at the Hubert H. Humphrey Building, 200 Independence Avenue, Suite 800, S.W., Washington, D.C. 20201.

    www.hhs.gov/live
    Call in number: (888) 469-1760
    Participant passcode: 4510479

    Agenda
    Day 1

    9:00 a.m. Call to Order, Roll Call, Logistics
    CDR Gustavo Ceinos, MPH Designated Federal Officer

    9:10 a.m. Opening Remarks
    Faith Newton, Ed.D Chair, CFSAC
    Nicole Greene Acting Director, OWH
    Don Wright, M.D., M.P.H.Acting Assistant Secretary for Health

    9:25 a.m. Swear In two of three new CFSAC Members: Don Wright, M.D., M.P.H.

    9:30 a.m. Approval of minutes from the last CFSAC meeting: CFSAC Members

    9:45 a.m. Updates of implementation of recommendations from the last CFSAC meeting
    CDR Gustavo Ceinos, M.P.H.Designated Federal Officer
    Ermias Belay, M.D.Centers for Disease Control and Prevention

    10:00 a.m. Agency Updates and Questions
    Centers for Disease Control and Prevention: Ermias Belay, M.D.
    Food and Drugs Administration: Keith Hull
    Social Security Administration: Michele Schaefer

    11:00 a.m. Presentation from Liaison Organizations Simmaron Research, Inc Courtney Miller
    Massachusetts CFIDS/ME & FM AssociationLeah Williams
    ME ActionTerri Wilder

    11:45 a.m. Report from the Medical Education Work Group: Gary Kaplan, M.D.Working Group Chair

    12:30 p.m. Lunch

    1:30 p.m. Discussion Medical Education Work GroupPresentation and Recommendations: CFSAC Members

    2:30 p.m. Public Comments: Members of the Public

    3:30 p.m. Adjourn

    Day 2

    9:00 a.m. Call to Order, Roll Call :CDR Gustavo Ceinos, MPHDesignated Federal Official

    9:10 a.m. Opening Remarks: Faith Newton, Ed.D Chair, CFSAC

    9:20 a.m. Agency Updates
    National Institutes of Health: Vicky Whittemore, Ph.D
    Health Resources & Services Administration: CAPT Sophia Russell, DM, MBA, RN
    Agency for Healthcare Research & Quality:Theodore Ganiats, M.D.
    Department of Veteran Affairs Drew A. Helmer, M.D., M.S.

    11:00 a.m. Public Comments: Members of the Public

    12:00 p.m. Lunch

    1:00 p.m. Report from the Pediatric Education Working Group and Parent Information Center Update:
    Faith Newton, Ed.D Chair, CFSAC and Carmen Sanchez:Education Program Specialist, US Departmentof Education

    1:45 p.m. Break

    2:00 p.m. Research Update on Adults ME/CFS: Jose Montoya, M.D. CFSAC Member

    3:00 p.m. Research Update on Pediatric ME/CFS
    (Calling in) Rosamund Vallings, M.D.Invited Speaker, Howick Health and Medical Auckland, New Zealand

    4:00 p.m. Closing Remarks and Next Steps: Faith Newton, Ed.D and CDR Gustavo Ceinos, M.P.H.

    5:00 p.m. Adjourn​

    **Final agenda subject to change due to availability of speakers​
     
  13. Sasha

    Sasha Senior Member (Voting Rights)

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  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Bump again! It's livestreaming now.
     
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  15. Sasha

    Sasha Senior Member (Voting Rights)

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    CDC guy talking now.
     
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  16. Sasha

    Sasha Senior Member (Voting Rights)

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    Terri Wilder and someone whose name I didn't catch is challenging CDC on their removal of exercise as a recommendation - and their silence about the fact that it can be harmful.
     
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  17. Sasha

    Sasha Senior Member (Voting Rights)

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    Just bumping this again - Day 2 starting 2pm UK time (although we're all likely to be on the live S4ME Q&A thread with the biobank team then!

    The most interesting item looks like this one:

    2:00 p.m. Research Update on Adults ME/CFS: Jose Montoya, M.D. CFSAC Member​
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks Sasha. Can you remember how they responded to that?
     
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  19. Sasha

    Sasha Senior Member (Voting Rights)

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    I have zero memory of what they said. Argh! Sorry. :banghead:
     
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  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    No worries - it can all blur together. Thanks for the samples you did provide.
     
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