What I would say at the CFSAC

Discussion in 'Fibromyalgia Main Forum' started by skeptik2, Oct 12, 2009.

  1. skeptik2

    skeptik2 Member

    I would say, "keep your "CFS", William Reeves, you aren't even
    looking at what I have. Keep your "CFS" patients; someday soon
    you will have your funding for "CFS" pulled out from under you, as
    you are not, and have never been, researching anything at all. You
    have only been lying and cheating and obfuscating the real, and
    debilitating illness the patients have. Keep on looking at those poor
    folks in GA who had the innocence to answer your silly questions.
    If any of them have the serious illness that I have, a test will be
    available soon that will blow your unscientific blather out of the

    Get your bags packed, Mr. Reeves; Emory is waiting for you in
    the psychiatry department; maybe even in a ward bed."

    I can't go to the meeting, and have been so busy learning about
    XMRV and what others are saying, I haven't even written to the
    CFSAC. I said all I had to say last May: maybe a class-action
    lawsuit or Congressional Inquiry will get the ACTION we want NOW.

  2. QuayMan

    QuayMan Member

    If you wrote anything for the May meeting, you might be able to summarise it in a few lines/paragraphs and then include a link to your piece for the May meeting if it is on the CFSAC. Just an idea.
  3. AuntTammie

    AuntTammie New Member

    I agree with QuayMan....even if you already wrote, summarizing that or writing something short and new would still be helpful....the more people they here from (even if many are the same ones they have already heard from) the better
  4. skeptik2

    skeptik2 Member

    Two I can count on!

    I have no idea how to 'link' anything! I just got my very first PC, and
    all I can do is visit sites and email so far.

    My last remarks were by telephone at the very end of the first day;
    I emailed them to Dr. Wanda...she printed them out for me as I have
    no way to do that.

    My remarks were 'A List of Whys"; then Hillary Johnson picked up
    on it and made her May blog referenced as 'inspired by (my name).
    My speech was also in the last issue of the NCF's Forum (Oct.),
    along with a "First Person" article by by 21 y.o. grdau, sick with ME.

    MAYBE tomorrow I can send a follow-up remark, but I am of a mind
    to ignore the CDC's 'cfs' moniker and ask only that our disease,
    especially in light of the recent XMRV findings, be moved to the
    NeuroImmune or whatever department HIV/AIDS is studied in. I
    want it completely out of Reeves' hands, period.

    I'll try to get Dr. Wanda to print it out for me once again.

    Thanks, both of you, for encouraging me to try once again.

    Hugs galore,
  5. QuayMan

    QuayMan Member

    Just remember that it should be in before 5pm EST on Wednesday (as far as I know).
  6. zeowa

    zeowa New Member

    I will check out the blog inspired by you over at Hillary's site. I'm happy that you were able to make remarks by phone. Good luck to you in learning how to use your PC!

    And thanks to Quayman and Aunt Tammie (and yourself) as well!