CDC's reply just about what I expected.

Discussion in 'Fibromyalgia Main Forum' started by meowee, Nov 7, 2006.

  1. meowee

    meowee New Member

    I had emailed them after the CDC had FINALLY recognized CFS as a legitimate illness. I was appalled when I went to the CDC's site and saw NOTHING about FM. In fact, it is not even in the index on their site. I emailed them and this is my reply I got a week after emailing them. I see a lot of thought went into this.
    ************************************************************
    Thank you for contacting The Centers for Disease Control and Prevention. Please contact The National Institute of Health at www.nih.gov or via phone at 301-495-5751.

    Thanks
    PI
  2. victoria

    victoria New Member

    Maybe you should take them up on their directions, and make the phone call? Altho I wouldn't count on who would be answering the phone, or where they'd direct your call!

    You might try writing a letter to the CDC and the NIH with a copy to your federal representatives (and make sure you put that on your letter to the CDC and NIH). It may take a while, like a few months!, but you'll probably get an answer.

    We had a question about something the IRS put in a booklet about tax changes for next year and couldn't get an answer, so we wrote our federal reps... it took a good 3 months, but the congressman did get a response from the IRS and then forwarded it to us.

    By the way, the holdup was not in the congressman's getting a response from the IRS, it was in his office forwarding it to us. I think the different gov't agencies respond pretty quickly to federal reps!?!

    hope this helps, it would be an interesting experiment!
    Victoria

  3. I saw that announcement about the CDC "recognizing" CFS after all these years. I thought what a joke that was, especially after all those years of denying that the disease existed, and implying that it was an AIYH disease. The CDC demonized CFS sufferers. All you have to do is read Oslers Web, and see how everybody was treated.
  4. rockymtnmom

    rockymtnmom New Member

    I was hoping it would be different, especially after the strides CFS has made in getting recognized.

    FMS needs people to do what the people w/ CFS did to get noticed.

    I wish I could be one of those people. Maybe someday.

    Shame on the CDC for not even listing it.

    Kim
  5. meowee

    meowee New Member

    Well, I took the CDC's advice, emailed NIH and received this..

    Thank you for writing to the NIH. Information regarding fibromyalgia is available on our website at: http://www.niams.nih.gov/hi/topics/fibromyalgia/fffibro.htm and http://www.niams.nih.gov/hi/topics/fibromyalgia/fibrofs.htm.



    If you need further assistance regarding this topic, please contact our National Institute of Arthritis and Musculoskeletal and Skin Diseases at: namsic@mail.nih.gov or phone them toll-free at: 1-877-226-4267.
  6. meowee

    meowee New Member

    one has not been updated since 2004, the other 2005. I guess, as usual, we are all lost in the government shuffle.
  7. victoria

    victoria New Member

    writing your federal reps... and since CFIDS has gotten a lot of press, your local papers. It could probably be the same letter with little modification. You never know what can happen.

    " Anyone who thinks they are too little to make a difference has obviously never been in bed with a mosquito!"
    --- Anita Roderick