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Meeting This Week

October 1st, 2012

UPDATE: You can watch the meeting via webcast OR you can call in to the meeting in listen-only mode at  1-866-761-7202. Passcode: 3117619.

 

The CFS Advisory Committee will meet on Wednesday and Thursday this week. The registration deadline for attendance and for public comment has passed, but I’ve collected some important links for you. I will be watching the meeting (and I hope you will too!) and will publish a summary on Friday.

  • The Federal Register notice for the meeting indicated:  “The meeting will be live-video streamed at www.HHS.gov/Live  . . . Listening-only audio via telephone will be available on both days. Call-in information will be posted on the CFSAC Web site.” The video link is not working, Update: the link is now working but still no call-in information has been posted yet.
  • The agenda for the meeting was posted after the deadline for comment registration had passed.
  • Public comment is scheduled for both days of the meeting, and will include comments from Lori Chapo-Kroger, Mary Dimmock, Pat Fero, Sue Jackson, Matthew Lazell-Fairman, Alexander Lopez-Majano, Denise Lopez-Majano, Jadwiga Lopez-Majano, Matthew Lopez-Majano, Billie Moore, Faith Newton, Matina Nicholson, Donna Pearson, Amy Squires, Charlotte von Salis, and me.
  • For background on how the committee functions, check out my post CFSAC Basic Facts.
  • Hopefully we will hear an update on the Department of Health and Human Services Ad Hoc Working Group.
  • I am continuing to investigate the committee’s membership background, including who nominated them and profiles of new members Dr. Adrian Casillas and Dr. Lisa Corbin.
  • One member of the committee resigned shortly after the meeting in June 2012. The committee bylaws (not currently available on the website) require a replacement be appointed within 90 days but there is no indication on the agenda that a new member will be sworn in for this meeting.
  1. waiting
    October 3rd, 2012 at 16:29 | #1

    Excellent, most effective presentation, Jennie!

  2. a
    October 3rd, 2012 at 17:46 | #2

    Your testimony was excellent! Thank you! I am sorry to hear you have been sick for so long.

  3. October 28th, 2012 at 19:07 | #3

    I suffer from exrmtee weakness as part of CFIDS along with an exrmteely resistant bacterial infection called Cpn. Kelly, I understand where you’re coming from. Everything that was true before is now reversed exercise supposed to help, does us in. Work a reliable activity is stripped away.I’ve tried mostly glutathione treatments and am now on Chinese herbs. I am hoping the breathing/oxygen remedy can help me a bit.I am past 60, all my friends have moved outside my area. Family is gone except for a miserable sister who makes my weakness worse, have cut off ties with her.It is always so shocking when this mystery illness hits us, I’m so sorry you had all the pain you did.denise

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