CFSAC Video link here

Discussion in 'Fibromyalgia Main Forum' started by Rafiki, Jun 3, 2009.

  1. Rafiki

    Rafiki New Member



    http://videocast.nih.gov/PastEvents.asp



    The page of past events is very clear and easy to read. The pertinent videos are very easy to find and play.



    Watching this video sends a message to the powers that be that there is interest in this issue. Not watching it, unfortunately, send the opposite message.

    As others have posted, views are counted.

    Be counted!


    ETA If you feel that you will not be able to concentrate or understand this right now, please do visit the site and, as was suggested by another poster, let the video play in the background. You may understand more than you think you can - the fog may lift a little, it's quite interesting - but even if it defeats you cognitively right now, you will still have made a statement!

    Even in a total fog we can make a statement!

    [This Message was Edited on 06/03/2009]
  2. Rafiki

    Rafiki New Member

    Agenda

    Wednesday, May 27, 2009

    9:00 a.m.
    Call to Order
    Opening Remarks

    Roll Call, Housekeeping
    Dr. James Oleske
    Chair, CFSAC

    Dr. Wanda Jones
    Designated Federal Official

    9:15 a.m.
    Agency Updates: HRSA, SSA, NIH, FDA
    Ex Officio Representatives

    10:00 a.m.
    CDC Update
    Research Program Strategic Plan
    Public Meeting
    Next Steps
    Dr. Mike Miller
    Ex-Officio

    12:00 p.m.
    Public Comment
    Public

    1:00 p.m.
    Subcommittee Lunch
    Subcommittee Members

    2:30 p.m.
    Subcommittee Reports

    Quality of Life
    Education
    Research
    Committee Discussion Committee Members

    4:00 p.m.
    Public Comment
    Public

    5:00 p.m.
    Adjourn


    Thursday, May 28, 2009

    9:00 a.m.
    Call to Order


    Housekeeping

    Dr. James Oleske
    Chair, CFSAC

    Dr. Wanda Jones
    Designated Federal Official

    9:15 a.m.
    Presentation: Pediatric CFS Case Definition
    Leonard Jason, PhD

    9:45 a.m.
    Presentations: Experiences of Families, Children and Youth with CFS

    Family Perspective
    Youth Living with CFS
    Parent Perspective

    Lauren Allen and Mrs. Allen DVD (introduced by Dr. Bateman)

    Ms. Rita Driscoll

    11:15 a.m.
    Roundtable Presentation/Discussion:

    CFS and FII/MBP
    Office of Child Abuse and Neglect (HHS)
    Department of Education Office for Civil Rights
    Discussion

    Dr. David Bell
    Catherine Nolan
    Shelley Jackson



    Committee Members

    1:00 p.m.
    Subcommittee Lunch
    Committee Members

    2:00 p.m.
    Public Comment
    Public

    2:30 p.m.
    Discussion and Development of Recommendations
    Committee Members

    4:00 p.m.
    Adjourn

    ~~~~~~~~~~~~~~~

    http://www.hhs.gov/advcomcfs/roster/index.html

    Roster of Committee Members

    Voting Members

    Chair
    James M. Oleske, MD, MPH, CIP
    Newark, NJ
    Term: 01/03/06 TO 01/03/10

    Rebecca Artman
    Middleburg, FL
    Term: 01/03/06 to 01/03/10

    Lucinda Bateman, MD, PC
    Salt Lake City, UT
    Term: 01/03/06 to 01/03/10

    Ronald Glaser, Ph.D.
    Columbus, OH
    Term: 04/01/07 to 04/01/11

    Arthur J. Hartz, MD, PhD
    Iowa City, IA
    Term: 04/01/07 to 04/01/11

    Kristine Healy, MPH, PA-C
    Chicago, IL
    Term: 01/03/06 to 01/03/10

    Leonard Jason, PhD
    Chicago, IL
    Term: 04/01/07 to 04/01/11

    Nancy Klimas, MD
    Miami, FL
    Term: 04/01/07 to 04/01/11

    Jason Newfield, Esq.
    Garden City, NJ
    Term: 07/01/06 to 07/01/10

    Morris Papernik, MD
    Glastonbury, CT
    Term: 01/03/06 to 01/03/10

    Christopher Snell, PhD
    Stockton, CA
    Term: 04/01/07 to 04/01/11

    ---

    Ex Officio Members

    Centers for Disease Control and Prevention

    Primary
    J. Michael Miller, PhD
    Associate Director for Science
    National Center for Zoonotic, Vector-borne, and Enteric Diseases

    Alternate
    Ermias Belay, MD
    Associate Director for Epidemiologic Science Division of Viral and
    Rickettsial Diseases National Center for Zoonotic, Vector-borne, and Enteric
    Diseases

    Food and Drug Administration

    Marc W. Cavaille-Coll, MD, PhD
    Medical Officer Team Leader
    Division of Special Pathogens and Immunologic Drug Products

    Health Resources and Services Administration

    Primary
    Deborah Willis-Fillinger, MD
    Senior Medical Advisor
    Office of the Administrator
    Center for Quality

    National Institutes of Health

    Eleanor Hanna, PhD
    Associate Director for Special Projects and Centers
    Office of Research on Women's Health

    Social Security Administration

    Primary
    Laurence Desi, Sr., MD, MPH
    Medical Officer
    Office of Medical Policy

    Alternate
    James Julian, Esq.
    Director, Office of Medical Policy


    EXECUTIVE SECRETARY

    Wanda K. Jones, DrPH






    [This Message was Edited on 06/03/2009]
  3. Forebearance

    Forebearance Member

    THE CDC PRESENTATION STARTS AT 1:33 on the video.



    Thanks for making this link obvious, Rafiki.

    I'm going to watch the part where Dr. Reeves gives his presentation again. It was from 10-12 the first day of the meeting. I want to send the CDC comments on his five year plan, so I think I need to see it again to figure out what I want to say.

    Even though I know it's going to make me mad to watch it!
    Forebearance

    P.S. As long as Dr. Reeves has job security, he doesn't have to care that much what we think. If we can find a way to reach his boss it would be great. I'm going to go do all the CFIDS Assoc's suggested e-mails next.
    [This Message was Edited on 06/03/2009]
  4. Rafiki

    Rafiki New Member

    You go kick some beehind.

    It's all I can do to lie here and listen. BUT, I know that lying here and listening is making a statement.

    Who wants to lie with me? I'll move over and we can ask the dog to get down... skootch in, there's room.

    Just close your eyes and listen as long as you can.

    When we are able we will follow Forebearance's great example and do more!

    If all you can do now is listen, listening is important!

    I hope you are around to guide me through the next step when I am able, Forebearance.

    I'll be the one whining: help!

    :eek:)

  5. Rafiki

    Rafiki New Member

    I have edited the second post from the top so that it contains only the

    Agenda

    and

    Participants

    for help in viewing the video.



    In solidarity with my foggy friends,
    Rafiki
  6. Forebearance

    Forebearance Member

    I'll be glad to, Rafiki! You are doing great!

    I just watched the first part of Day 1. I can't believe how unhelpful the Social Security Administration representative was. Do people who work for the government turn into mindless blobs???

    Forebearance
  7. Sacajawea2

    Sacajawea2 Member

    HI!
    The link you pasted didn't work for me...I tried the link from another thread and it worked so perhaps something got left off...listening to it right now...I'll put what I used to get to it, to see if it's different...I think the asp was left off of your link! :)

    SJ

    http://videocast.nih.gov/PastEvents.asp
  8. Rafiki

    Rafiki New Member

    I can't believe I did that!!! Where did the "asp" go?! Thank you so much for catching that!!! I've fixed it now. I hope I didn't confuse people in my befuddled efforts to unfuse them!

    Thank you so much!

    argh,
    r
  9. simpsons

    simpsons Member

    one good point is that the top advocates will have been watching and what they said is now on tape for all to see. its like when the police record an interview on video its a record and there is now no shreads of paperwork to hide behind. they said somepositive stuf and we heard them getting excellent expert evidence. They cannot deny anything we have the video.

    so we can now hold them to it.

    i'm going to get a friend to burn it to cd so i can watch bit by bit

    could be a useful tool
  10. simpsons

    simpsons Member

    As of today, both days of the CFSAC meeting are available online at:

    http://videocast.nih.gov/PastEvents.asp


    1) Day 2 is now archived (as a video)

    2) Day 1 is now available as PODCAST (as well as former video)


    Jean Harrison
    MAME inc
  11. Rafiki

    Rafiki New Member

    Want to be counted!

    Going to take my brain for a spin on day 2 and see how I do.

    Have you been counted yet?

    Peace out,
    Rafiki
  12. konijn

    konijn New Member