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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. Andrew

    Andrew Senior Member

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    The next CFSAC meeting will be held on November 8, 2011 from 9 a.m. to 5 p.m. and November 9, 2011 from 9 a.m. to 4:30 p.m. at the Holiday Inn Capitol, Columbia Room, 550 C Street, S.W., Washington, D.C. 20024. Hotel phone number: 202-479-4000

    http://www.hhs.gov/advcomcfs/
  2. Andrew

    Andrew Senior Member

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    If you notice, the meeting will be at the Holiday Inn. This will be good for patients who stay there, because they can lie down in their rooms during lunch break (or whenever they need to). What worries me, though, is this new location might discourage them from setting up a live feed of the meeting via Internet, along with the ability of people to call in and testify. I've emailed the Designated Federal Official, Nancy C. Lee, M.D. Is anyone else concerned about this.
  3. Dolphin

    Dolphin Senior Member

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    Here's a quick copy of the page at: http://www.federalregister.gov/arti...e-chronic-fatigue-syndrome-advisory-committee . It gives deadlines to make submissions, etc.

  4. SpecialK82

    SpecialK82 Senior Member

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    Thanks for posting info, Andrew please let us know what you find out about the internet feed. I love the idea of having this in a hotel, perfect setting for us, it almost makes me feel like I could go, if it wasn't such a long drive.
  5. Andrew

    Andrew Senior Member

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    I received no response to my question. It might help if other people would email and ask if this will happen. This will show that more than one person wants this.
  6. SpecialK82

    SpecialK82 Senior Member

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    Done - just sent email.
  7. Andrew

    Andrew Senior Member

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    FWIW, I signed up anyway. In in my email I told them I can't testify in person, etc. I got a response confirming my registration, but nothing was said about telephone testimony, live feed, etc.

    If anyone hears about this, please let us know.
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Andrew,

    Since I've already had some contact with Dr Lee in connection with the forthcoming meeting and previously in connection with the Minutes of the last meeting, I have asked her today if she would confirm whether those registering to give oral testimony will still be able to do so via phone link.

    I've also asked whether the proceedings will continue to be streamed as live video and whether a videocast of proceedings will be made available afterwards.

    I've mentioned that these meetings are viewed by many both inside and outside the US and that the videocasts are of particular interest to those unable to attend due to health status or location. It's easier for some to watch the proceedings in small chunks over a period of several days once they are posted online rather than try and follow an entire day's proceedings.

    I've also mentioned that some of us in the UK who like to follow these meetings have slow broadband speeds and we cannot stream the live proceedings (I can't usually buffer them live but I can view the videocasts) and that I very much hoped this facility would continue.

    I'm not planning to submit Written Testimony, myself, but I know some UK patients have submitted Written Testimony, in the past.

    I'll let you know, Andrew, when I receive a response from Dr Lee.

    Suzy
  9. Frank

    Frank Senior Member

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    This one is on my watchlist
  10. MDL

    MDL

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    If you compare the most recent notice with the one from the meeting in May: http://edocket.access.gpo.gov/2011/2011-6702.htm , you will see that the previous notice contained the following, which is conspicuously absent from the current notice:
    "The meeting will be broadcast over the Internet as a real-time streaming video. It also will be recorded and archived for on demand viewing through the CFSAC Web site".

    I doubt this was an oversight.
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I've received no confirmation yet from Dr Lee about whether this will be continued. If the video recording is set up and operated by staff at the usual venue - it might be argued that staff cannot be spared to set this up at this new location.

    But no rationale has been given, in the Federal Notice, or elsewhere that I have seen, for the decision to switch venues, anyway.

    If no clarification is forthcoming via email in the next day or two, might someone in the US consider telephoning Dr Lee for clarification?

    I am aware that these meetings haven't always been streamed live and archived (May 2009 appears to be the earliest) but a precedent has been set and it would be a pity if this cannot be sustained.

    Suzy
  12. SpecialK82

    SpecialK82 Senior Member

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    Here's the reply to the email that I sent - just an automated response, it did not answer the question:

    Thank you for your interest in the next meeting of the Chronic Fatigue Syndrome Advisory Committee.

    The Federal Register Notice (FRN) will be posted October 5, 2011 giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting November 8 and November 9, 2011 and also provide all of the information for individuals who wish to provide public testimony to address the Committee.

    The CFSAC Web site http://www.hhs.gov/advocomcfs will provide a link to the Federal Register Notice after it is posted.
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Which email address did you use? The committee address or Dr Lee's direct email address?

    Suzy
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Nancy C. Lee, MD

    Deputy Assistant Secretary for Health-Womens Health

    Director, Office on Womens Health/OASH/OS/DHHS

    PH: (202) 690-7650

    Fax: (202) 401-4005

    Email: Nancy.Lee@hhs.gov
  15. Rrrr

    Rrrr Senior Member

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    Urgent: November CFSAC concerns

    SOMEONE ASKED ME TO POST THIS IMPORTANT MESSAGE. -- BEST, RRRR

    _______

    Subject: Urgent: November CFSAC concerns

    Hi, all,

    It has come to my attention and was confirmed today that the CFSAC arrangements next month are concerning for a number of reasons, some of which seem to indicate that the government is once again marginalizing people with CFS:

    a. The meeting was moved from a government building off-site to the Capitol Holiday Inn. It is not clear why this is being done. One thought is that the gov't is afraid of protesters (go Rivka!) and changed venue partly because of this. I know some folks are talking about demonstrating at this meeting too.

    b. The meeting will not be broadcasted live on-line like it has the last 2 years. Again, it is not clear why it will not be. Instead it sounds like audio will be available only with possibly video available later on. Certainly, this cannot be for lack of viewship -- I have somewhere in my old notes that several hundred people watched it live -- 700+ at least for the May meeting. This is a huge increase as before the videocasts, I understand, less than 100 people usually attended the meetings in person and the majority of CFS patients could not attend due to health or financial reasons. It should be noted that many, many NIH and DHHS meetings are videocasted live and probably with a lower number of people watching. The number of testimonies has also gone up over time and I believe this is partly due to patients better understanding what CFSAC is.

    c. People who have not presented at the meeting before will be given priority to present. Although this is done prima facie for fairness, it might also mean that people who are knowledgeable/ experienced about CFS and the gov't's history of dealing with it might be shut out from testifying. Does this apply to reps from groups like IACFS/ ME, PANDORA, CFIDS Association of America, or can different reps from these groups still testify?

    I believe these are concerns that advocacy groups, patients, and their carers should be aware of so they can consider writing or calling the government representatives and questioning them about it directly AND SOON since the meeting is coming up.

    Dr. Nancy Lee is the new designated federal official and her e-mail is: Nancy.Lee@hhs.gov. http://www.womenshealth.gov/about-us/who-we-are/national-staff/nancy-lee.cfm

    Dr. Howard Koh is the rep for the Secretary of health and contact info is at:
    http://www.hhs.gov/open/contacts/ophs.html

    Finally, in terms of preparation for CFSAC, the CDC website is currently under review and many I am sending this e-mail to have participated with the CDC on that. I suggest that we encourage people writing or testifying at CFSAC to mention what negative impact the CDC website has had on their lives (e.g. how their docs took the information, how it might have skew media perception of CFS, etc.) and how the website could be modified to make the situation better.

    A concerned patient advocate
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    It's being shouted about "in another place", as Parliamentarians say, that the meeting will not be videod.

    I have seen no firm confirmation of this myself from CFSAC Secretariat.

    If anyone has received written or verbal confirmation direct from Dr Lee then I invite them to present it here.
  17. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I have contacted Dr Lee, again, just now, and asked that a response to my request for clarifications be dealt with promptly.

    ETA: I have also CCd my request for clarification to CFSAC Chair, Dr Chris Snell.
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I have been in touch, this morning, with another CFSAC Committee member and received some information (not Dr Lee or Dr Snell).

    I have been advised that his understanding is that the meeting would be live streamed as audio only but with the possibility of video afterwards and that a reason for the meeting venue being relocated to the Holiday Inn was to avoid the problems associated with attendees needing to be escorted in and out of the building.

    Please do not forward this information or rely on it until official clarification has been received from Dr Lee or Dr Snell.

    Thanks,

    Suzy
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well it would be nice to have a name to attribute concerns to.


    There is already a thread on the next CFSAC meeting and I shall be restricting my comments to that thread, rather than across a second thread, except for the following message which I have already posted here:

    http://forums.phoenixrising.me/show...ovember-8-2011&p=212999&viewfull=1#post212999


    I have been in touch, this morning, with another CFSAC Committee member and received some information (not Dr Lee or Dr Snell).

    I have been advised that his understanding is that the meeting would be live streamed as audio only but with the possibility of video afterwards and that a reason for the meeting venue being relocated to the Holiday Inn was to avoid the problems associated with attendees needing to be escorted in and out of the building.

    Please do not forward this information or rely on it until official clarification has been received from Dr Lee or Dr Snell.

    Thanks,

    Suzy

    ETA: In the other thread, I have also said that I have seen no official confirmation about the streaming arrangements for this meeting, and invited the author of the above to provide confirmation that it has been officially confirmed what the arrangements are. (It makes communicating rather difficult if folk aren't prepared to put a name and contact details to the concerns that are being circulated on their behalf.)
  20. Jill McLaughlin

    Jill McLaughlin *****

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    An urgent concern that many have are how UK people seem to be taking over purely US issues.
    To most in the US the main complaint to HHS has been that these US groups (CFIDS Assoc,
    Pandora etc.) do NOT represent us or a vast majority of patients, so perhaps they have
    heard it enough to respond accordingly.

    These groups have been practically the only ones attending for some time now and do
    NOT have the support of probably the majority of the overall patient community or
    stakeholders.


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