CFS Awareness/Lobby Day..Sept.12,2003

Discussion in 'Fibromyalgia Main Forum' started by cma331, Sep 2, 2003.

  1. cma331

    cma331 New Member

    Hello Friends,
    Want to make everyone aware of this day, and hope you will all send a letter to your Senators, Representatives, to request funds for CFS research.Let them know you are a voting person and are ill.Let them know about this disease and its symptons.Write, speak out, and let people know we are here.Funding can only be procured from the people who fight for us in Washington, D.C. They will only know to seek this funding if we tell them. Be brave...tell them yourselves!
    I know a lot of us are low on money, but not on writing!!
    Remember CFS is well known to us, but maybe not to them.
    We must stick together.
    In my letters i also brought up the problem of KU being taken off the market.....
    WE MUST BE THE FORCE BEHIND THE CURE!
    Thank You.,
    Carole
  2. kalina

    kalina New Member

    Get up there!
  3. Mikie

    Mikie Moderator

    Carole, thanks for letting us know about this.

    Love, Mikie
  4. insomniac1

    insomniac1 New Member

    just bumping thanks for the info
  5. cma331

    cma331 New Member

    Mikie;
    Being a "newbie" , i don't know how to do this.....but can we keep this letter on top for a week?
    I also found out funding ran out this summer for CDC and NIH.......
    Thank you.......
    Carole
  6. cma331

    cma331 New Member

    Freshair,
    Thank you for your response........More people are needed like you; to take an action.....We just can't sit back......and say, let someone else do it...We need those #'s to be heard.......W/O $$$$$$$$$$$$.........no re search!!!!!!!!! W/O research.......no cure......Simple as that.........
    Thanks again...You are the only one that responded that you took an action.....
    Wish i knew how to get that letter back to the top.......We only have a week left.......Can anyone help with that???????
    Thank You,
    Carole
  7. sumbuni

    sumbuni New Member

    LET'S GO GET 'EM!

    Sending up prayers, and sending out letters!

    Sumbuni
  8. annepat

    annepat New Member

    I'm Bumping.

    The problem with CFS funding is that the only physicians who are eligible for it are those who incorporate a psych component into the disease research.

    I went to a university psych seminar on women and chronic illness recently. The lecturer covered chronic illness-AIDS, MS Lupus, cancer-the only treatment listed for CFS/Fibro was SSRI's, graded exercise, and cognitive therapy. I pointed out that her hospital appears to be sponsoring free and illegal advertisements for Ampligen in the treatment of CFS, despite the fact that they are not involved in the Ampligen trials-how could they be when the only thing that they offer CFS patients is psych treatment, and the only spots left in the Ampligen trial are the the spots reserved for patients who are forced to pay for the drug?

    State HHS workers, health insurers w/ low lifetime psych. caps, and long-term disability insurers w/low lifetime caps all benefit from psych diagnosis in my state, and they are the largest and most powerful employers. They are making sure that CFS stays classified as a psychiatric disease.

    The research $$ needs to go to direct treatment of these diseases, and to the physicians who practice in good faith and inaccordance with their oath and provide us with APROPRIATE treatment, not psychiatric propaganda.

    annepat