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Next CFSAC meeting June 16-17, 2014

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Apr 24, 2014.

  1. Nielk

    Nielk

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    I just got this e-mail from CFSAC:

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  2. Nielk

    Nielk

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    More info:

    The 2014 Spring Meeting of the CFSAC will be held on June 16 and 17, 2014 in the Hubert H. Humphrey Building, 200 Independence Ave. SW, in the 1st Floor Great Hall, Washington, DC. The meeting will be from noon -5pm ET on Monday June 16, and from 9am – 5pm ET on June 17.
  3. Denise

    Denise Senior Member

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    NOTE -- this meeting is only 1.5 days long (starting at noon on Monday and full day Tuesday) and it is being held in the Great Hall (NOT in Room 800).
  4. Nielk

    Nielk

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    Is the great hall bigger?
  5. Denise

    Denise Senior Member

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    The Great Hall is on the main floor of HHS and it is a larger space than Room 800. The only other time I am aware of that CFSAC has been held there was in October of 2009.

    (fwiw -from what I understand, Room 800 was not available.)
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  6. Andrew

    Andrew Senior Member

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    Below is information about the upcoming CFSAC meeting to be held on June 16 - June 17. Further details about the meeting will be posted in the Federal Register Notice next week. We will send out a notice on the listserv at that time.

    While we had several members whose term on CFSAC recently ended, the CFSAC Support Team is optimistic that we will receive the slate of individuals who will begin their terms in time for the June meeting. We will have a quorum for the meeting.

    Because the Secretary also appoints the CFSAC Chair at the same time as the other members, we don't have a confirmed appointment for the Chair. If needed, Nancy Lee, DFO, will be the acting Chair for the meeting.

    A draft version of the agenda is below. Once the agenda is finalized, it will be posted on the CFSAC website, http://www.hhs.gov/advcomcfs/ <http://www.hhs.gov/advcomcfs/> .

    The meeting will be live-video streamed at http://www.hhs.gov/live. Listening-only via telephone will be available on both days. Call-in information will be posted on the CFSAC website prior to the meeting.

    Individuals who plan to attend in person should register at http://www.blsmeetings.net/CFSAC. All registration should be completed by June 12, 2014. Attendance by visitors who are not U.S. citizens is welcome, but prior approval is required by sending a request to CFSAC@seamoncorporation.com <mailto:CFSAC@seamoncorporation.com> before June 5, 2014. Members of the media will also need to register.

    All attendees will be required to show valid, government-issued picture identification (state or federal) for entry into the federal building.


    Members of the public will have the opportunity to provide public comment at the meeting or via telephone. International calls cannot be accommodated. Individuals wishing to provide public comment in-person or via phone will be required to request time for public comment by Monday, June 9, 2014 at the following link: http://www.blsmeetings.net/CFSAC. An email to acknowledge receipt of the request for public comment will be sent from CFSAC@seamoncorporaton.com<mailto:CFSAC@seamoncorporaton.com>. Another email will be sent by June 12, 2014 to confirm the individuals' time for public comment.


    Individuals wishing to submit written comment for the public record should send an electronic copy of their written testimony to: CFSAC@seamoncorporation.com<mailto:CFSAC@seamoncorporation.com> by June 12, 2014. The document for the public record cannot exceed 5 single-spaced, typed pages, using a 12-point typeface; it is preferred that the document be prepared in the MS Word format. Additional requirements will be available on the Federal Register Notice.

    Requests to participate in the public comment session and provide written testimony will not be accepted through the CFSAC email account. Please send all questions about specific public comment requests or inquiries to CFSAC@seamoncorporation.com .<mailto:CFSAC@seamoncorporation.com%20.>

    Persons who wish to distribute printed materials in person to CFSAC members should submit one copy to the Designated Federal Officer at cfsac@hhs.gov, <mailto:cfsac@hhs.gov> prior to June 12, 2014.



    DRAFT Agenda
    CFSAC Meeting
    12:00 p.m. to 5:00 p.m. (ET)
    June 16, 2014

    12: 00 p.m.

    Call to Order
    Roll Call

    Nancy C. Lee, M.D.
    Acting Chair
    Designated Federal Officer (DFO)


    12:10 p.m.

    Logistics


    Nancy C. Lee, M.D.
    Acting Chair
    Designated Federal Officer (DFO)

    12:15 p.m.

    Opening Remarks


    Request Approval - CFSAC Minutes March 11, 2014



    12:30 p.m.

    Agency Updates



    CDC, AHRQ, NIH

    1:30 p.m.

    Public Comment


    Public

    2:30 p.m.

    Break

    2:45 p.m.

    ME/CFS Researcher and Clinician-
    Scientist Recruitment Workgroup


    Workgroup Members



    3:45 p.m.

    Committee Discussion

    Committee members

    5:00 p.m.

    Adjourn






    9:00 a.m. to 5:00 p.m. (ET)
    June 17, 2014

    9:00 a.m.

    Call to Order
    Roll Call (c-list below)

    Nancy C. Lee, M.D.
    Acting Chair
    Designated Federal Officer


    9:15 a.m.

    Logistics



    Nancy C. Lee, M.D.
    Acting Chair
    Designated Federal Officer (DFO)


    9:30 a.m.

    Agency Updates


    CMS/FDA/HRSA/SSA

    10:30 a.m.

    Break




    10:45 a.m.

    Public Comment


    Public

    11:45 a.m.

    Lunch




    1:00 p.m.

    Patients Registry Models
    Autism Patient Registry

    National Database for Autism Research

    Patients Like Me

    Beth A. Collins Sharp, Ph.D., R.N.


    Dan Hall, Program Manager

    TBD

    2:00 p.m.

    Future Directions
    Post IOM Report Release

    Model: Follow up of an IOM Report
    "Epilepsy Across the Spectrum"



    Nancy C. Lee, M.D.
    Designated Federal Officer (DFO)

    Margaret Jacobs
    Science Community Liaison
    American Epilepsy Society

    Committee Discussion

    3:15 p.m.


    Break



    3:30 p.m.

    Future Directions
    Committee Discussion


    Committee members

    4:15 p.m.

    Future Directions
    Audience Open Forum

    Comments and Questions

    Persons in attendance

    5:00 p.m.

    Adjourn






    ________________________________________________________
    The CFSAC Support Team
    http://www.hhs.gov/advcomcfs/index.html

    Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
    http://www.hhs.gov/advcomcfs/cfsac_email_list.html
  7. Denise

    Denise Senior Member

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  8. Andrew

    Andrew Senior Member

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    The last I remember is the CFSAC voted to allow 5 minutes for each speaker, and that it was only reduced to 3 minutes during the snow storm to accommodate a shorter meeting. Yet, when I look at the registration, it says everyone is still only allowed 3 minutes. Can anyone tell me if/when the CFSAC voted to reduce all meetings to 5 minutes, despite them not being special circumstances?
  9. Nielk

    Nielk

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  10. Denise

    Denise Senior Member

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    For people who signed up for public comment ---
    The Fed Reg notice says that public comment is 3 minutes per person. That confused me, so I checked with CFSAC (OWH) today asking why it wasn't the 5 minutes we are used to.
    I was told that the Federal Register notice is correct and public comment slots are only 3 minutes long (again). I was told that Nancy Lee made that decision.

    (According to the Federal Register notice, people will be notified by June 12th if they get a public comment time slot.)
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  11. Denise

    Denise Senior Member

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  12. Desdinova

    Desdinova Senior Member

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    Anyone know wether this will be avalible online? YouTube would be nice for those who can't watch it live. But it seems certain officals must not want them being posted on sites like YouTube.
  13. WillowJ

    WillowJ Senior Member

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    they usually end up on YouTube, e.g.




    You can find a list of links, official minutes, and other such documents here:
    http://www.hhs.gov/advcomcfs/meetings/index.html
  14. Andrew

    Andrew Senior Member

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    I have a question for anyone who signed up for telephone testimony. Have you received any kind of acknowledgment of your application? I've received nothing.
  15. Denise

    Denise Senior Member

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    I asked about acknowledgement and was told that after I registered, the next screen had text in red that was the acknowledgement.
    (I have since pointed out to them that those who register to attend receive an email acknowledgement of their registration and that email acknowledgement for those hoping to provide public comment would be of help. If you agree, I encourage you to let them know. It is probably worth copying CFSAC (HHS) as well.)

    Hopefully people will find out tomorrow (date mentioned in Federal Register) if they get a public comment time slot.
  16. Andrew

    Andrew Senior Member

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  17. Denise

    Denise Senior Member

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    I may well be wrong but I interpret "You will be notified via email of your assigned date and time to give presentation no later than Thursday, June 12, 2014."
    to mean that if you don't hear, you have not gotten a slot.
  18. Andrew

    Andrew Senior Member

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    I got my notification and time to speak
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  19. lnester7

    lnester7 Seven

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    To those who will speak what is the general message this time around??? I just hope we can finally see some progress and move forward and demand some more actionable items.
  20. Denise

    Denise Senior Member

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    I suspect that a number of people will be addressing concerns about P2P as well as ongoing concerns lack of cohesive progress on the part of most government agencies.
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