We have been silent long enough it's time to make noise

Discussion in 'Fibromyalgia Main Forum' started by mrstyedawg, May 3, 2006.

  1. mrstyedawg

    mrstyedawg Member

    If you do, the only way is to make some noise and demand that our government spend some of its money to research this disease. The CDC does not care about us.

    One easy thing you can do is go to congress.org on the left enter your zip code. It will give you a list of the representatives of your state. By writing just one letter, you will be able to e-mail to your state representatives and President Bush.

    We have been silent long enough. Get everyone on the band wagon. We can do this if we all pull together.

    Come on, where is our fighting spirit. I know that we have one or we would all be dead by now.
  2. angelkisses6

    angelkisses6 New Member

  3. mrstyedawg

    mrstyedawg Member

    All I know is that I have had this disease for 22 years and the CDC has not been doing anything.
  4. julieisfree05

    julieisfree05 New Member

    If you are under the impression that the CDC and NIH are doing everything they can to help PWCFIDS, you NEED to read "Osler's Web" by Hillary Johnson.

    It's a complete, detailed, history of the "Epidemic" of CFS that started in the early 1980s in the US.

    The only outbreak that the CDC investigated was in Incline Village, NV (reported by Drs. Peterson and Cheney), and they did EVERYTHING they could to trivialize the illness and ostracize ANY doctor or researcher that had an interest in finding the cause or treating CFIDS - including refusing to even consider granting research funds to anyone who was associated with Cheney, Peterson or David Bell.

    In the late 1990s, the GAO found that the CDC was guilty of misapproprating funds that congress had specifically earmarked for CFS research.

    Dr. William Reeves, who is now shouting the news of the "first evidence of a physiological basis for CFS" (FIRST? LOL!) was one of the WORST offenders!

    Steve Strauss, the lead investigator for CFS at NIH is even worse. As late as '95 (when the book ends), he was still speaking at conferences and claiming that CFS was basically depression and people who had it were making it worse by sleeping too much during the day and not exercising!

    Reeves has been FORCED to change his position, due to the new research, but I haven't been able to find a word from Strauss about the new findings. With his ego, I'm pretty sure that we won't be hearing from him.

    The CDC has been waging a mis-information campaign regarding this illness for 20 years, and it's ALL documented in "Osler's Web". I just re-read it so I could enjoy comparing the real history with what Reeves and the CDC are now saying. Very satisfying!

    EVERYONE with this illness should read this book, so they can understand the politics and lying that have affected how this disease has been buried by the CDC.

    The CDC is NOT a friend of this illness. Everything they've done has been under pressure from congress, patient groups and activists. If the CDC had their way, we would still be a bunch of upper-middle class, hysterical, depressed white women.

    Sorry for the rant, but everything I've written here is true. Read it for yourself.

    julie (is free!)

    She could have laid in be for hours
    givin' misery the power
    but she didn't have time.. - Terri Clark
    [This Message was Edited on 05/04/2006]
  5. mrstyedawg

    mrstyedawg Member

    You are 100% correct. That is why I say we have to get our rep. involved. I contacted CDC years and years ago and got the brush off. It is my opinion, also, that the only reason CDC finally gave this some recognition is because of groups such as the grass roots iniative and congress.


    I'm sorry but the CDC is not not on our side.
  6. mrstyedawg

    mrstyedawg Member

    The CDC will not do anything if they do not have funding for this. That is why I say we need to make some noise. No we shouldn't 'bite the hand that feeds us" but they have got to have some money to buy the food. The money for CDC comes from the gov. and the gov. is really us. They will not investigate this if someone is not behind them pushing them.

    I too have been an optimist for the past 22 years, but now I am a realist.
    [This Message was Edited on 05/04/2006]
    [This Message was Edited on 05/04/2006]