FREE - Call/ Listen in to the CDC CFS meeting

Discussion in 'Fibromyalgia Main Forum' started by Lichu3, Apr 25, 2009.

  1. Lichu3

    Lichu3 New Member

    For people who want to participate but can't due to illness/ distance. Note there is an international line (not free) for those in other countries.

    I don't know if this has been posted but:

    a. CDC Research Plan meeting is Monday 4/27 1-5PM Eastern Standard Time;
    public comments taken from 2-5PM; 3PM is when telephone comments start

    b. You can start dialing at 12:45 PM EDT.
    U.S.: 1-888-790-3448
    International: 1-517-308-9438

    c. There will probably be some message to let you punch in code: 7629727

    d. Public comments (per person) limited to 5 minutes

    The full agenda is at:

    You can also write in to by MAY 1 to:

    I hope we can fill up their phone lines and their e-mail inbox. Don't expect others to care about our illness if we don't take action. Complain to the source.
    [This Message was Edited on 04/25/2009]
  2. Lichu3

    Lichu3 New Member

    I hope you are able to participate.

    Realize that this teleconference was likely made possible because of the number of call-ins and e-mails to the last CFSAC committee meeting in May 2008.

    If there is a robust response from the public, the gov't is more likely to use its resources for our input.

    Even if you are only able to listen in for a short period or just write a short e-mail to the CDC noting the need for such access for CFS sufferers, rest assured that someone (or some computer) is likely tallying the number of responses.

    "90% of life is showing up." -- Woody Allen
  3. SpecialK82

    SpecialK82 New Member

    thanks so much for posting this.

    So just so I am clear -

    We can call in just to listen to the proceeding, is that correct? In otherwords, we do not need to be signed up to make comments?

    I sent them an email - I wonder if they have read those before the proceedings - or if they just get some sort of summary in aggregate?? I'm hoping we can make a difference!

  4. Lichu3

    Lichu3 New Member

    From what I read, you can call in just to listen. Comments at 2PM start with people in attendance then 3-4PM are telephone callers, then 4-5PM anyone else who wants to comment.

    People who e-mailed the CDC prior to 4/22 have first priority to speak but my feeling is that given there was only one week or so to get back to the CDC, there likely will be room for more people to speak. And it's possible that telephone calls may be accepted prior to 3PM given that many of us cannot make it in person to the meeting.

    In any case, I don't think it should affect people calling in who want to comment. If, as a group, lots of us call in, the telephone line might be busy (conference call may have limited spaces). This is a good thing. I would encourage people to retry again later on.

    If you can't get through, I would encourage them to write by MAY 1 as you have already done!

    Suggestions from the meeting may be put into the CDC's 5-yr. plan for CFS research, to be presented in Washington D.C. to the CFS Advisory Committee at the end of May. This will be publicly released for examination.

    Then there is about a month of so (until June 30) for the public to comment again.

    So this is a good opportunity for us to try to influence policy.
  5. Lichu3

    Lichu3 New Member

    Thanks for asking about me. I'm about the same, with colds/ flus pulling me down intermittently.

    Yeah, I totally agree with you. Rather than focusing on people who ALREADY have CFS, the CDC for some strange reason does studies on people who don't have a diagnosis yet and people who recovered within a year (the Dubbo studies, in which 98% of subjects return to full function in a year). I think it's fine to try to understand the beginning of the illness, but don't generalize the results to people who HAVE NOT recovered within 1-2 years. Frankly, I'm not sure people in the Dubbo studies have the CFS that affects people for years.

    And the CDC hasn't give much acknowledgement about outside research in the materials.

    Anyway, I could rant on but I will confine it to my comments for the CDC.
  6. mezombie

    mezombie Member

    And good to hear an update, though I'm sorry you're still doing poorly.

    I will try to listen. Without gagging.

    I've sent an email and signed the petition on the Reeves CFS research definition.

    Bumping this so for early risers on the East Coast.

  7. outofstep

    outofstep Member

    So give them a call if you want to hear what they're up to-public comments start at 2pm est, phone comments at 3
  8. QuayMan

    QuayMan Member

    Just because people didn't ring in, doesn't mean they can't E-mail in which is probably more in the comfort zone of most people with ME/CFS.

    Details are at:
    - have to be in by tomorrow so not much time but even a few lines could be useful to show the level of interest.

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