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Next CFSAC meeting date has been announced for November 8, 2011

Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2011.

  1. Dolphin

    Dolphin Senior Member

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  2. Nielk

    Nielk

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  3. Nielk

    Nielk

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  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    04 November 2011


    CFSAC Meetings Page:
    http://www.hhs.gov/advcomcfs/meetings/index.html


    CFSAC November meeting Call-in Information and Meeting Agenda

    http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_callininfo.html

    CFSAC Fall 2011 Meeting (November 8-9)

    Audio Call-In Information


    The Meeting of the Chronic Fatigue Advisory Committee will be available via
    AUDIO Lines. The following call-in information will provide access to the
    meeting via audio lines:

    Please dial the participant dial-in number:
    Participant Dial-In Number: (866) 395-4129

    Please use the following passcodes for each day:
    Passcodes:

    Tuesday, November 8: 24756185
    Wednesday, November 9: 24759937

    Please note, each caller can press *0 at any time during the call to
    contact the operator for support.

    There will be an operator on the line to welcome you and each caller will
    be asked their name and email address (this is not a requirement). You will
    be placed into the conference.

    During the lunch hour, callers may hold the line or choose to call back to
    access the conference.

    The CFSAC meeting will begin from 9:00 am - 5:30 pm Tuesday, November 8 and
    9:00 am - 4:30 pm on Wednesday, November 9.

    -------------------

    November 8-9 2011 Meeting Agenda

    http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_agenda.html

    CFSAC Fall 2011 Meeting (November 8-9)

    Day One

    Agenda - CFSAC Fall 2011 Meeting
    November 8, 2011


    9:00 am Call to Order
    Opening Remarks
    Christopher R. Snell
    Chair, CFSAC

    Roll Call, Housekeeping
    Nancy C. Lee, M.D.
    Designated Federal Officer

    9:10 am International Classification of Diseases-Clinical Modification
    (ICD-CM)
    Donna Pickett, RHIA, MPH
    National Center for Health Statistics

    10:00 am Public Comment Public

    11:15 am Break

    11:30 am Welcome Statement from the Assistant Secretary for Health
    Howard K. Koh, M.D., Ph.D

    12:00 pm Agency Updates: AHRQ, CMS, FDA, HRSA
    Ex Officio Members

    1:00 pm Subcommittee Lunch Subcommittee Members

    2:00 pm Public Comment Public

    2:45 pmBreak

    3:00 pm Future Interdisciplinary Research for CFS Utilizing a Variety of
    Scientific Disciplines
    Gailen Marshall, M.D., Ph.D.
    Committee Discussion

    4:00 pm Committee Discussion

    Past CFSAC Recommendations Committee Members

    5:00 pm Adjourn

    --------------------

    Day Two

    Agenda - CFSAC Fall 2011 Meeting
    November 9, 2011


    9:00 am Call to Order
    Opening Remarks
    Christopher R. Snell
    Chair, CFSAC

    Roll Call, Housekeeping
    Nancy C. Lee, M.D.
    Designated Federal Officer

    9:15 am HHS Office on Disability
    Rosaly Correa-de-Araujo, M.D, M.Sc.,Ph.D
    Deputy Director, HHS Office on Disability

    10:00 am Centers for Disease Control and Prevention Webpage
    Eileen Holderman
    Nancy G. Klimas, M.D.
    Ermias Belay, M.D.

    10:30 am Break

    10:45 am Agency Updates: CDC, SSA, NIH
    Ex Officio Members

    11:45 am Minimal Elements for Papers
    Leonard A. Jason, Ph.D.

    12:15 pmS ubcommittee Lunch
    Subcommittee Members

    1:15 pm Public Comment
    Public

    2:15 pm Break

    2:30 pm Committee Discussion

    Finalize Recommendations Committee Members

    4:30 pm Adjourn

    [ENDS]
     
  5. SpecialK82

    SpecialK82 Senior Member

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    So glad to see discussion scheduled for 1/2 hour on the CDC website - hoping we see progress, if not, we need to keep the pressure on the CDC as this is the source most relied upon by doctors.
     
  6. Nielk

    Nielk

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    I have been working on my testimony by phone. I am now at 5mins 35 secs. I can't reduce it more.
    I know I have to take something out but, everything I have I feel is so essential.
     
  7. Andrew

    Andrew Senior Member

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    I agree. We need to keep the pressure on. Especially now that there is some openness to fix things.

    I've been watching the CDC website since the last meeting, and noticed they did remove a lot of the very harmful biased stuff. But, there are still some serious problems. I hope I don't hear them say everything is fixed. It is not.
     
    justinreilly likes this.
  8. Andrew

    Andrew Senior Member

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    Here's what I'd do.

    1. I'd look to see if any of my points could be stated more simply and clearly with fewer bells and whistles.

    2. I'd make a list of my points and rank them by order of importance. I'd remove the least important onces, knowing I can present them the next meeting. Otherwise, I'm stuck with a talk I can't deliver.

    BTW, my goal was to get my talk down to 4 minutes and 30 seconds. That gave me some buffer so I didn't have to worry.
     
  9. Nielk

    Nielk

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    Thanks Andrew for the good practical advice!
     
  10. SpecialK82

    SpecialK82 Senior Member

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    Thanks for telling us the CDC website changed, I haven't looked at it in the last few months, I haven't read it all yet, but I'm glad to see that it's going in the right direction - like you said, will they say it's finished?

    On a side note - I'm glad to see that Nancy Klimas will be at the meeting (speaking about the website), I have been mourning her loss on the Committee.
     
  11. Andrew

    Andrew Senior Member

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    I thought Nancy Klimas was changed so she could be there on an ongoing way. Perhaps in some sort of different advisory position. Not sure, but I thought I heard something like that.

    But as far as I know, this is Leonard Jason's last meeting. He has been a valuable patient advocate in those meetings. I'm very bad at organizing some sort of "thank you" activity, so I won't try. But maybe those who like what he has done can email him and thank him.
     
  12. SpecialK82

    SpecialK82 Senior Member

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    Now that you mention it, maybe this meeting is both Klimas and Jason's last? My memory is foggy, I remember that they talked about their departure last meeting, but I guess this is it? I believe this is Dr Christopher Snell's last one as well.

    Like you said we need thank you's for all of them.
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    thanks for keeping track of this. as you know we have to watch them like hawks. i looked thru the list they have on the status of past CFSAC recommendations and they fudge a lot with the status, ie they say things are 'completed' that they really didn't do anything on, so i wouldn't be surprised if they say the website changes are 'completed.' you're right we can't let them get away with that.
     
  14. Andrew

    Andrew Senior Member

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    I just looked at the roster, and it appears as though Snell, Klimas, and Jason will be active until 04/01/12. And I'm guessing that date is before the next meeting. So this would be their last. Too bad, considering that now there is finally some openness to listening to the committee.

    http://www.hhs.gov/advcomcfs/roster/index.html
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Yes, Lenny Jason has confirmed that his term comes to an end following this meeting.

    Suzy
     
  16. frenchtulip

    frenchtulip Senior Member

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    Participant Call-In phone no. (866) 395-4129 So it is a toll-free no.--right?
     
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Today, a message has been conveyed by a CFSAC Committee member to Martha Bond at HHS for clarification of whether audio streaming + Call in phone is being provided or solely Call in. Concerns for the implications of only phone line access are also being raised.

    When I have a response from Ms Bond, via my contact, I'll report back.

    Suzy
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I have also contacted Martha Bond, today, for clarification.

    Suzy
     
  19. Nielk

    Nielk

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    I'm ready with my phone testimony for tomorrow around 2:15 pm.
     
  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Good luck, Nielk.

    If it's not confirmed that there will be an audio stream, I won't be able to listen to you or the agenda item in which I have the most interest. Last meeting, I had a friend emailing me live updates on the progress and outcome of one of the agenda items which was great because I couldn't get the live audio/visual feed to buffer properly for Day One.

    It still says on the CFSAC website in the Meeting Notice:

    "There will be a live audio link to the two day meeting, which will allow listeners to hear the entire meeting in real time."


    Let's hope that Ms Bond gets back to me, today.

    Suzy
     

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