November 2013 CFSAC Meeting: 3 Weeks before Meeting, Information for Patients Still Outstanding

I sent the following email inquiring about the November 2013 CFSAC meeting, which is scheduled for November 12th and 13th, 2013, less than 3 weeks from now. I’d encourage other patients who have questions about the upcoming meeting to email CFSAC at cfsac@hhs.gov for clarification as well.

Dear CFSAC Members,

I am writing to inquire about the video submissions for the upcoming November CFSAC meeting. What format and length do the videos have to be? How do they have to be submitted? What will be the deadline for submitting videos?

We are less than 3 weeks away from the meeting and it does not seem like any instructions regarding the pre-recorded patient videos are yet on the CFSAC website. As you know, patients are very sick and need potentially substantial lead time to be able to record their statements and submit them. I ask that you consider that when you determine the deadline for the submissions.

Also, is a registration required–and if so by when–or is simply logging on according to instructions, which will presumably be posted at some point before the meeting, sufficient? If a registration is required, when will instructions on that be posted and what is the deadline for registering?

The page linked to in the below email of September 12, 2013 from CFSAC announcing the November 2013 meeting does not provide the above or any other information about the meeting (e.g., the deadline and other instructions for written comments). If the information is already somewhere else on the CFSAC website and I merely overlooked it, would you be so kind as to send me a link to the correct page.

Thank you!

Sincerely,
Jeannette Burmeister

On Sep 12, 2013, at 3:06 PM, OS OPHS CFSAC (HHS/OPHS) <CFSAC@hhs.gov> wrote:

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its fall meeting as a webinar on November 12 and 13, 2013, from 12:00 noon – 5:00 pm ET each day.  This will not be an in-person meeting.  Because of budget constraints and the government-wide Sequestration, federal advisory committees have been told to conduct at least some of their meetings as webinars or use other similar formats.

We will use webinar technology to accept questions to the committee submitted in real time, similar to the questions received on note cards from the last meeting.   For the first time, we will accept prerecorded videos as public comment for the fall 2013 meeting. As in the past, we will have “live” public comment via phone and will accept written public comments.  Detailed instructions for joining the webinar and providing public comment will be posted on the CFSAC website www.hhs.gov/advcomcfs/ at a later date.  Agenda items will be posted on the CFSAC website by October 28.

The 2014 CFSAC spring meeting will be in-person in Washington, DC; exact dates will be announced in 2014.

We continue to work on a contract with the Institute of Medicine (IOM) to develop recommendations for clinical diagnostic criteria.  When the contract is finalized, we will provide additional information via the CFSAC listserv and website.  This topic will be included as an agenda item for the November webinar.

If you have any questions, please email cfsac@hhs.gov.

Thank you,

________________________________________________________
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

To unsubscribe from the CFSAC-L list, click the following link:

http://list.nih.gov/cgi-bin/wa.exe?SUBED1=CFSAC-L&A=1

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10 Responses to November 2013 CFSAC Meeting: 3 Weeks before Meeting, Information for Patients Still Outstanding

  1. Laurel says:

    Thanks for doing this, Jeannette. Seems like everything we have to do with them is like pulling teeth.

  2. Jennie says:

    Thanks for doing this, Jeannette. I’ve emailed about this as well. I’m also trying to get confirmation that they’ve appointed Dr. Gary Kaplan to the committee. Nominations for the five slots opening in 2014 are due this Monday, October 28th! Info here: http://www.occupycfs.com/2013/10/22/dont-lose-sight-of-cfsac/

  3. jspotila says:

    They just announced that the meeting has been postponed to December 10-11. At least that gives us more time to pull public comment together.

  4. CFSAC just sent this message postponing the fall meeting till December 10th and 11th:

    “Due to the shutdown of the federal government, the next CFSAC meeting is being postponed until December 10-11, 2013 from 12:00 p.m. to 5:00 p.m. (EDT). The agenda will be posted on the CFSAC website no later than November 15, 2013.

    We now have the capacity to accept pre-recorded video testimony for public comment and will continue to schedule public comment via phone and accept written submissions. The Federal Register Notice will be posted no later than November 18 and include detailed instructions for joining the webinar and requesting public comment. Information will also be posted on the CFSAC website at http://www.hhs.gov/advcomcfs.

    Please know that we value your involvement and regret any inconvenience that this delay may have caused you. Thank you for your patience as we work through this challenging time.

    Thank you,
    CFSAC Support Team

    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

    Learn more about the Health Insurance Marketplace at HealthCare.gov!”

  5. Kathy D. says:

    Go, Jeannette! Your team cheers you on. I haven’t even been thinking about this, as I’ve had other things to take up my limited mental energy — and I can’t multi-think.
    So glad you’re on their case, and will follow up.

  6. Alpa says:

    Thanks for doing this Jeanette, and for keeping us informed. It’s very much appreciated.

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