1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

CFSAC 1/2 day meeting today - Dec. 11

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Dec 11, 2013.

  1. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    The meeting is starting at noon:

    Revised agenda for today’s CFSAC webinar:



    Revised Agenda (Eastern Standard Time)



    12:00PM Call to order, Roll Call (including Introduction of new members, Housekeeping, Welcome, Opening remarks)

    12:20PM IOM Report - Nancy Lee (including ~20min. for committee questions)

    12:50PM Agency Updates

    1:10PM Public Comments (please limit to 3 min. each)

    1:45PM Break

    2:00PM Liaison representatives - reports

    2:15PM Education and Patient Care subcommittee and CDC website Committee report

    2:30PM ME/CFS Researcher and Clinician-Scientist Recruitment Workgroup Report

    3:00PM Education for ME/CFS Working Group Report

    3:30PM Committee discussion re: working groups and any recommendations

    4:55PM Closing remarks

    5:00PM Adjourn





    The CFSAC support team hopes to schedule another webinar (either 1-day or 2-day, perhaps in February) before the next scheduled face-to-face CFSAC meeting in May or June 2014 that would specifically focus the committee discussions and recommendations about the workgroup efforts.
    Ren likes this.
  2. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    Last edited: Dec 11, 2013
    Izola, WillowJ and Nielk like this.
  3. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    WillowJ likes this.
  4. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    I'm in...are you?
  5. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    Do you have sound?
  6. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,848
    Sofa, UK
    I've got no sound either
  7. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,848
    Sofa, UK
    has anybody out there got sound?
  8. waiting

    waiting Senior Member

    Messages:
    194
    Likes:
    219
    No, no sound either.
  9. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    This is a joke...right?
  10. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,848
    Sofa, UK
    not a very good one
  11. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    I don't think anyone has sound. people are posting on fb that they have no sound.
  12. waiting

    waiting Senior Member

    Messages:
    194
    Likes:
    219
    I just contacted Seamon Corporation -- at both their telephone # (got someone's voicemail, so left a message) and sent an email:

    I got the contact info as below from Denise L-M's email list...
    "If you have technical difficulty during the webinar, please contact Seamon Corporation at 301-658-3442 or CFSACDec2013@seamoncorporation.com."
    Ren likes this.
  13. waiting

    waiting Senior Member

    Messages:
    194
    Likes:
    219
    Oh boy, are we all brain-fogged or what? Seamon Corporation just called me back-- we have to dial in to hear the audio portion (they've gone waaay back, technologically!)
    Access to the Audio Portion of the Webinar:
    Conference Call Number: 877-918-6627 | Passcode: 4429527


    edit: this works, I can now have audio on my phone. They're recording it, so hopefully it will all be available later, since we've all missed the last 18 minutes.
    Izola, Valentijn and Ren like this.
  14. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,848
    Sofa, UK
    Thanks Nielk...glad of the forums to tell me it's not just me...I'd configured audio settings in order to record system sound to help me (maybe) write an article on this, so I thought it was something I'd done.

    My guess is that this is because they've configured it for those of us who are listening in to not be able to speak - and they've switched off audio output for us all instead of just switching off audio input.
    Ren likes this.
  15. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,848
    Sofa, UK
    Hmph. That's no help for me here in the UK, 5 hours on the phone to the US would cost a bit. This was never explained. I don't think it's us that's brain-fogged on this occasion...

    The recording doesn't normally go up until a month or two after the meeting.
    justinreilly, aimossy, Kati and 2 others like this.
  16. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    Thank you waiting. Now I have sound too...on a reg. call. In what way is this a webinar???
    justinreilly, Izola and Ren like this.
  17. waiting

    waiting Senior Member

    Messages:
    194
    Likes:
    219
    I've missed a lot of it, but right now, Dr. Lee is defending/explaining the IOM contract -- Eileen Holderman and Dr. Mary Ann Fletcher are stating their disapproval of the IOM contract. Dr. Lee said the contract cannot be cancelled, that it's a "done deal".
    justinreilly and Valentijn like this.
  18. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    Q- why done IOM contract sterted in secrecy?
    A - ..........................................it's complicated.........................
    justinreilly likes this.
  19. Nielk

    Nielk

    Messages:
    5,086
    Likes:
    4,645
    Queens, NY
    Mary Ann- why leave CFSAC members in the dark re. their own recommendation fulfillment?
    justinreilly likes this.
  20. waiting

    waiting Senior Member

    Messages:
    194
    Likes:
    219
    Dr. Fletcher continues to make objections to the IOM case definition contract. She states support for the CCC. She has concerns about the number of people on the contract who are not involved in the field.
    justinreilly, Kati, beaker and 3 others like this.

See more popular forum discussions.

Share This Page