Watch CFSAC meeting today on your computer!

Discussion in 'Fibromyalgia Main Forum' started by mezombie, May 16, 2009.

  1. mezombie

    mezombie Member

    The link to the video cast will be made active on the
    day of the meeting (Wednesday, May 27, 2009) on
    the NIH Video cast website:

    Please note: RealPlayer is required to view the
    videocast, and users can download the latest version
    of RealPlayer:

    It’s recommended that users test their computer and
    network connection here:

    They will be counting how many tune in, so please play the video, even if you aren't able to watch all of it.


    This is big news, as many have worked hard to get the CFSAC meetings accessible to those who aren't able to get to the meetings.

    Please read the threads from Quayman regarding the CFSAC meeting and the CDC's draft 5-year strategic research plan for CFS for more information. If you have trouble finding them, scroll down to Quayman's post on THIS thread for directions.

    Remember, you can submit written comments to the meeting via email. To be distributed to CFSAC members as read-ahead material, you should get your comments in by Wednesday, May 20th, 4:30 pm (EST). Comments received after that time and through May 22 will be made available to the CFSAC at the time of the meeting.

    The CDC's draft plan for the next five years of CFS research is slated for discussion. Quayman's thread contains a number of comments made about this plan. Rephrasing those points would make a good comment. So would simply telling them what your life is like since you fell ill. Any note, no matter how brief, will alert them that this issue matters to them.


    [Reposted with permission, with header included as requested]

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    [From:] Jean Harrison

    CFSAC meetings to be video-cast

    About five years ago, MAME petitioned the CFSAC to
    have their meetings video cast so that those of us
    who are not able to attend the meetings can get the
    benefit at least of seeing and hearing them.

    First the CFSAC, under Larry Fields, turned us down.
    They talked about expense, privacy.. a bunch of
    things which did not, in our opinion stand as credible
    reasons. Especially as NIH was already podcasting
    other advisory committee meetings.

    We had gone through the ADA thoroughly, and felt
    confident of our opinions. Eventually we went to the
    Office of Civil Rights. They too turned us down, for
    reasons similar to the ones cited by the CFSAC.

    We were given exactly 30 days to request an
    administrative review, a lengthy and involved
    process. We managed to comply. Later to our
    dismay we found that the normal time allowed for a
    request for administrative review was 60 days. They
    were to get back to us. And they never did.

    We debated our options – sue the Office of Civil
    Rights for the violation of our civil rights? It didn’t
    make sense.. go to the ACLU – a possibility. We
    received a generous donation to pursue the suit, but
    the lawyer we found made inquires and came up with

    Wanda Jones, we found, took an interest in what we
    were trying to accomplish. This was a great change.
    We sent her all the correspondence. Not too long
    after that we got a phone call from the OCR about
    the status of our request. As I process things slowly
    I left a message asking that we communicate via

    Today we got the following news. The meetings will
    be video cast. NIH will be checking to see how many
    people watch in, so please do log in & encourage
    others to do so.

    You can watch the meetings at your own pace, take
    breaks as needed, re-watch if necessary. We are no
    longer excluded from benefiting from the meetings.
    Though not interactive, this will give each and
    everyone of us with access to a computer access to
    the meetings.

    We hope to get the letters on a site where others
    can read them if interested.

    The following message was sent by Rebecca Artman:

    Good news!

    Wanda has made arrangements with NIH to have the
    CFSAC meeting accessible via videocast.

    The technology will provide access to those
    individuals unable to attend the meeting in person
    and support on demand access after the meeting
    since the proceedings will be archived.

    The link to the video cast will be made active on the
    day of the meeting (Wednesday, May 27, 2009) on
    the NIH Video cast website:

    Please note: RealPlayer is required to view the
    videocast, and users can download the latest version
    of RealPlayer:

    It’s recommended that users test their computer and
    network connection here:

    The videocast information will be posted on the
    CFSAC webpage and also available in an automated
    message generated from the CFSAC mailbox.

    Jean Harrison


    [This Message was Edited on 05/26/2009]
    [This Message was Edited on 05/26/2009]
    [This Message was Edited on 05/26/2009]
  2. Khalyal

    Khalyal New Member

    Good information, as always
  3. AuntTammie

    AuntTammie New Member

    but what time does it start? & how long will it go?
  4. mezombie

    mezombie Member

    Of course, this is only approximate, but it should give people an idea of when to tune in.


    CFSAC Agenda - May 27-28, 2009
    U.S. Department of Health and Human Services

    Wednesday, May 27, 2009
    9:00 a.m. to 5:00 p.m.

    Thursday, May 28, 2009
    9:00 a.m. to 4:00 p.m.

    Room 800, Hubert H. Humphrey Building
    200 Independence Avenue, S.W.
    Washington, D.C. 20201


    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

    12:00 p.m.
    Public Comment

    1:00 p.m
    Subcommittee Lunch
    Subcommittee Members

    1:00 p.m.
    Subcommittee Reports

    1.Quality of Life
    Committee Discussion Committee Members

    4:00 p.m.
    Public Comment

    5:00 p.m.

    Thursday, May 28, 2009

    9:00 a.m.
    Call to Order


    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

    1.Family Perspective
    2.Youth Living with CFS
    3.Parent Perspective

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

    Ms. Rita Driscoll

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

    1.CFS and FII/MBP
    2.Office of Child Abuse and Neglect (HHS)
    3.Department of Education

    Dr. David Bell
    Catherine Nolan [invited]
    Committee Members

    1:00 p.m.
    Subcommittee Lunch
    Committee Members

    2:00 p.m
    Public Comment

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

    4:00 p.m.
  5. simpsons

    simpsons Member

    i just got my email giving permission to repost and saw your post. ;-)

    i note that they are going to be looking to see who watches so its very important that this facility is used. i look forward to some lively discussions after the meeting.

    i.m full of praise for jean harrison and wanda who obviously did a lot of work and demanded their rights here. hats off to those two

    how fantastic that we can get to watch and see what they are saying not just a meeting that we the subjects of are excluded from

    Don.t forget to get behind annette whittlemore WPI who is fighting for four new treatment and research centers. annette needs people to help by showing their support.

    anyway i think there is a lot to be explored in the area off civil rights

    would anyone be interested in seeing the letters published from the process its very interesting?

  6. Forebearance

    Forebearance Member

    I am so happy about this! Thanks for posting!

    I will be watching it for sure, although I don't think I can get up early enough to catch the beginning of the day stuff. I look forward to seeing Dr. Bell's presentation.

  7. QuayMan

    QuayMan Member

    Well done to Jean and her "team" and also anybody in recent times who wrote in to ask for people to be able to watch it.
  8. skeptik2

    skeptik2 Member

    Thank you to all of you who used your precious energy to help mount the campaign that brought this about...a billion thanks to Jean and Wanda and all who were helpful to them.

    I will get up each day and I will watch every single minute. I don't care the repercussions or relapse it will cause; I may sleep for 3 days, but so what?

    Bless you all, and may honor, conscience and duty be in the hearts of those in charge of our future (healthy!) lives: the NIH, CDC, SSA, Office of Child Abuse and Neglect (????? What's that about?), and the researchers, scientists and doctors who will be very instrumental in those futures of all of us.

    Being skeptik, after 20 years, I may have my hopes up too high right now, because I feel this is our one last gasp for meaningful change in our government's stance re CFS/ME. If they don't come through for us, maybe the Wittemore Institute can...Let's pray, hope, desire!


  9. denis321

    denis321 New Member

    Obviously it would be best to watch live but if people aren't able to watch ALL of it live, please make an effort to watch some of it during those two days.

    From what I understand, the videocast is suppose to be available AFTER the meeting as well so people can re-watch or watch the parts that they missed. I would not be surprised if the government also counts people who watch after the live meeting.
  10. QuayMan

    QuayMan Member

    In the top message of the thread, mezombie says:
    "Please read the threads from Quayman regarding the CFSAC meeting and the CDC's draft 5-year strategic research plan for CFS for more information."

    While it was in my head, I thought I'd post the links in case those threads go off the top page.

    I hope to start writing my written submission later today.
    Fingers crossed the meeting goes well (and the CFSAC are happy with the number of people who watch either live or after it is broadcast). I believe some of the people who were on the phone at the CDC meeting will be on phone again so it will be interesting to see how that goes! It was pure drama the last time, I thought.

    CFSAC meeting May 27-28 - people can give a submission over the phone

    CDC's DRAFT Strategic Research Plan
  11. skeptik2

    skeptik2 Member

    They will email me to let me know what time they will be calling me to warn me my 5 min. is coming up..

    I wrote it up today, entitled "A List of WHYs".

    My voice is bad, thin and raspy, but they will also accept my email copy for the archives.

    Emailing them was FAST...reply the next day...Try it, you might like it!

    If you've had this topic sitting on your chest like a big ole' grey elephant, email them, ask to give your comments, and start writing them up and practicing your speech!

    Luck and hope to us all...
    p.s. Mine is 6 minutes, but doubt they'll kick me off, right?
  12. QuayMan

    QuayMan Member

    Well done for signing up, skeptik2.

    I'm afraid I have got the impression they might be a bit strict about the length of oral submissions. But I don't really know, to be honest.

    I remember at the CDC meeting where the guy (doctor) who was asked "Are you finished now?" and he said no and went on another rant - I don't think that will happen at this meeting . At that meeting they had so many hours to fill and were trying to fill it. At this they have lots of other business to get through.
  13. 3gs

    3gs New Member

    can this be burned on a cd?
  14. outofstep

    outofstep Member

    You might want to edit your speech so that your most important points are in the first 5 minutes-they were cutting people off at first at the CDC meeting when they were sticking to the 5 minute time limit.

    Thanks to everyone who is speaking or submitting letters-you rock
  15. denis321

    denis321 New Member

    to take the videocast.

    Here's NIH's technical help number. If you call them, a PERSON answers!

  16. skeptik2

    skeptik2 Member

    I edited every word, took out a paragraph and every if, and, or but, and got it down to 4M,24sec. That should give me time to take a breath!

    I warn you, I'm going to be speaking really fast, just to get the excitement of it going; I really care that a written copy will be handed out to the Committee and the attendees (BLESS THEM!). I also care that it will be archived.

    I know the history of CFS/ME, but I'm not as good at "remembering every little detail, like so many others here", so my comments are more an impassioned speech. It may not be the best I can do, but I'm suffering right now, and it will be the best I can do right now.

    I've had a timer and practiced over and over, and I'm going to be rewriting it for a visual speech for myself after I email it to the NIH email addy, with pauses and prompts like Obama uses, LOL!

    Thanks for reminding us to make sure we address our remarks to the President; I'd forgotten about that!

  17. mezombie

    mezombie Member

    and it flunked :(

    Thanks to the people who gave tips on how to get it to work. I'll try those.

    I'm amazed there is an actual PERSON who offers tech help we can call! I spent too much time "talking" to pre-recorded prompts on the phone yesterday, so I particulary appreciate that.

    It looks like there will be much more participation from us at this meeting than the CFSAC has ever seen!

    A big cheer to all those who are getting involved, even if it's just to watch! (Remember, they will be counting how many are watching).

  18. simpsons

    simpsons Member

    if you have any problems check out quaymans post as people there have provided more info.

  19. simpsons

    simpsons Member

  20. jasminetee

    jasminetee Member

    Skeptic 2 that's awesome! Thank you so much and thank you everyone who has written in and/or is speaking. I'm so grateful. A big thanks to Quayman and Mezombie for keeping us all updated about this.

    [This Message was Edited on 05/24/2009]

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