Just completed a CFS Study

Discussion in 'Fibromyalgia Main Forum' started by stschn, Nov 12, 2008.

  1. stschn

    stschn New Member

    I was asked by PFL to take part in a CFS nutrition intake study and I felt that it was finally something that I could do. It was actually done with the National Cancer Insitute which I was somewhat surprised by. A any rate it took a little over and hour and was all done on line. I also noticed that in the Cort Johnson email of 11/09/08 he also mentioned a special edition "Cracking the Foundation" on the startling work the Pacific Fatique Lab is doing. That should be worth checking out. [This Message was Edited on 11/12/2008]
  2. jasminetee

    jasminetee Member

    Thanks for that message. I found this on Cort's site just now:

    "Very good researchers have applied for CFS grants and come away dismayed at their reception. One researcher recently suggested to me that the federal government has not just ignored CFS but has actively shut down avenues for CFS research. This person felt that private research foundations would have to carry the load. With an environment like that its no wonder we’ve had such difficulties."

    This is what we need to fight against. We need healthy advocates who can make a difference for us.

  3. aftermath

    aftermath New Member

    This is absolutely correct. And the absolute #1 thing we can do to get real research going is to spend the $35.00/yr to be part of one of the national CFS advocacy groups.

    As things stand right now, the US research budget for ME/CFS couldn't buy the toilet paper in the AIDS, Cancer or MS labs.

    The only way this will change is through ORGANIZED PRESSURE ON CONGRESS.

    I know money is tight for a lot of us. Still, the numbers of people who are sick (even those on this board) who allow themselves to be counted as members of these organizations is appalling.

    Cort Johnson is very correct in that the only way we can ever get things to change is to organize and push for real funding...