Discussion in 'Fibromyalgia Main Forum' started by winsomme, Oct 14, 2009.

  1. winsomme

    winsomme New Member

    So I have been reading the links about the upcoming CFS meeting and agree that it is important that we all try and submit something. Even if it is one paragraph just saying who you are, how long you have been ill and how important it is to get the research going on a broader scale - especially with the recent discoveries...

    The problem is that no where in the materials is it made clear how we submit a written testimony.

    the website to register it seems just sends an automated reply about being at the meeting. I called the phone number and they are going to get back to me about how we submit a written summary to be included as part of the meeting.

    It sounds like they are not quite certain about how written materials should be submitted....
  2. mbofov

    mbofov Active Member

    I just called Wanda Jones' office and an incredibly nice woman I think named Loretta Jones actually called me back with the info.

    It's okay to submit comments via e-mail to:

    They are limited to 5 typewritten pages.

    Here's the CFSAC website: and here's the text re how and when to submit comments from

    "Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages."

    So the deadline is Oct. 15, not Oct. 14.

  3. winsomme

    winsomme New Member

    Okay, just spoke with someone in the office.

    They said we can email the same address as the one to register for the event. The problem is that when i sent an email to register i got an automated reply saying there were no more slots available for live testimony.

    made me feel like this address was just for registering.

    anyway, they said this address should still be used for written testimony. I also got a FAX number to send for those who have that option and want to make sure there info gets in.

    here are the contacts:

    202-401-4005 attn Executive Secretary CFSAC (FAX)