Draft of CFSAC 10/2009 recommendations.........................

Discussion in 'Fibromyalgia Main Forum' started by denis321, Nov 8, 2009.

  1. denis321

    denis321 New Member

    The official recs aren't online yet but here is what CFIDS.org got from attending the meeting.


    Once the official recs come out, one thought might be to send them to your Congressional reps and request that they urge Secretary Sibelius (or her Assistant Secretaries) to read and respond to each one. And/ or write Sibelius directly.

    Historically CFSAC hasn't received an answer from the Secretary (it's unclear even if they read the recs). Better to have a "not sure" or "no" response than no response at all.

  2. denis321

    denis321 New Member

  3. jasminetee

    jasminetee Member

    Thanks for this Denis, you're always on top of things.

    I don't trust Kathleen Sebelius, the Secretary of the HHS. The CFSAC recommendations have been barely followed up on in the past and for the most part have been completely ignored. Wanda Jones did say that this is normal for advisory committees to experience. Business as usual...

    If I'm wrong that this time that would be grrrrrreat!
  4. mbofov

    mbofov Active Member

    for all your efforts here - they are very much appreciated!

    I've been reading Osler's Web. Everyone here should read it. It describes in great detail how federal agencies respond to public pressure - in general, they don't. I think the only thing that might get their attention would be the media exposing their utter failure with CFS, and the potential for contamination of the blood supply due to their neglect.

    I live in southern California and plan to contact the L.A. Times, which, despite a shrinking paper and shrinking subscriber base, still manages to do some good investigative reporting. I have no idea if they'll respond, but I've seen several times where they broke stories of corruption in their paper and suddenly two days later public agencies are falling all over themselves, trying to cover their tracks and calling for investigation etc.

    I'm not saying to not write Sec. Sibelius - I'm hoping with the new administration HHS might be a little more responsible to us - but still think the media is potentially our best friend.

    I know someone else (I think usedtobeperkytina) is contacting 60 Minutes - that would be fabulous if they could get on board. And it would be a little ironic too - Osler's Web describes a 20/20 story done by Steve Kroft (now of 60 minutes) back in the late 80's, where he did a nudge-nudge, wink-wink story on CFS, basically saying we're all tired and would like a rest.

    Thanks again -