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when is the next CFSAC meeting???

Discussion in 'General ME/CFS Discussion' started by lnester7, Feb 1, 2014.

  1. lnester7

    lnester7 Seven

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    When is the next CFSAC meeting???
  2. Denise

    Denise Senior Member

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    As a reminder ---- the meeting in December was webinar only and was scheduled for 2 afternoons (12-5pm).
    But the first day was cancelled because a snowstorm closed the government.
    So that day has been rescheduled to Tuesday, March 11, 2014 and will also take place from 12 noon to 5pm (EST).

    It seems that people who were scheduled to give public comment on the day that was cancelled will have the opportunity to do so at this upcoming meeting. (And "to maintain parity" with those who spoke in December, the comment slots will only be three minutes in length.)

    The spring meeting is supposed to be a live (in-person) meeting but I do not think dates for that are available yet.


    It might be good for this thread to be moved to advocacy or upcoming events (or other appropriate place).
    Last edited: Feb 1, 2014
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  3. lnester7

    lnester7 Seven

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    I think we should start inviting the press to cover these events. If this is ok (I am not sure this is accepted by the committee) I would like to start making a list of CFS friendly reporters to cover the event. I am tired of uneducated press and Psy bubble. I will send the emails and invitations.
  4. Denise

    Denise Senior Member

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    I know that was at least one member of the press at the IOM meeting. a couple at the FDA meeting (April 2103) and there have sometimes been members of the press at CFSAC meetings though they have to register (and therefore identify themselves).
    lnester7 likes this.
  5. Denise

    Denise Senior Member

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    I understand why you are tired of uneducated press and psycho babble/bubbling.
    It might be worth thinking about how dry CFSAC meetings tend to be. The nuances are likely not to be obvious to most first time viewers.
    Given that, what story would the press get out of the meeting that "would sell"?
    Also it would be good if whoever would be writing about a CFSAC meeting is really familiar with the history, politics, etc. of our situation. Otherwise there'd be quite a few gaps to fill...
    Last edited: Feb 2, 2014
  6. lnester7

    lnester7 Seven

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    I agree, Maybe sending invitations to those that have written educated pieces, because is webcast, there is a good chance for coverage. We can have different lists, depending on the type of events. Example if we have a demonstration, Vs CFSCA meeting.


    One I want to work on is the Upcoming Stanford Meeting. I am not sure if they invite the press?!?!?
  7. Denise

    Denise Senior Member

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    On March 19th, the day before the IACFS/ME meeting begins, Stanford is hosting this:
    http://chronicfatigue.stanford.edu/documents/ChronicFatigueSyndromeCME2014-FORMS-r3a.pdf
    which includes this session:

    Lunch and Learn “Media Portrayal of ME/CFS”
    Moderator:
    Phil Bronstein
    Panel:
    Natalie Boulton, David Tuller, Erin Allday

    I would imagine (though it would be worth asking IACFS/ME to confirm), that given that session, IACFS/ME has already contacted media about the conference.

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