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(US) Let's try to make sure the CFSAC recommendations are acted on

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Dec 6, 2009.

  1. Dolphin

    Dolphin Senior Member

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    (Please re-post)

    I don't think this has been highlighted here so I thought I'd do it.

    People need to do what they can to make sure the CFSAC recommendations are
    highlighted and preferably acted on, as much as possible. As people will
    recall, I feel strongly about recommendation #3 (which is also mentioned in
    recommendation #4).

    Tom

    =======================================================

    From the December edition of the CFIDS Association of America's CFIDSLink
    e-newsletter:

    -----

    Write to Secretary of Health Kathleen Sebelius and elected officials to
    request action http://www.capwiz.com/cfids/home/ on the CFS Advisory
    Committee's latest set of recommendations and the urgency of expanded
    research. We've made it easy for you with letter templates at our Grassroots
    Action Center.

    -----

    [TK: I've copied below the intro bit. There is then a sample letter (which
    I haven't copied in) that can be edited]


    ----
    http://www.capwiz.com/cfids/issues/alert/?alertid=13463086&type=CU

    Write to Secretary of Health Sebelius

    Ask her to implement the CFSAC's recommendations


    Kathleen Sebelius is the Secretary of Health and Human Services. She is
    responsible for all the agencies of the Department of Health & Human
    Services (DHHS), including the National Institutes of Health (NIH) and U.S.
    Centers for Disease Control & Prevention (CDC). On October 29-30, the
    federal CFS Advisory Committee met and passed a set of four recommendations,
    copied below. Please use our form letter to support swift implementation of
    these recommendations by Secretary Sebelius.

    Recommendations from the CFS Advisory Committee
    to the Secretary of Health & Human Services October 30, 2009

    Recommendation 1:
    The CFSAC renews its recommendation to the Secretary to establish Centers of
    Excellence for CFS that would effectively utilize state of the art knowledge
    concerning the diagnosis, clinical management, treatment and clinical
    research.

    Recommendation 2:
    The CFSAC renews its recommendation to the Secretary, as submitted 6 months
    ago, to establish progressive leadership at the CDC. It is disappointed that
    no response has been made to the earlier recommendation and it is interested
    in getting feedback, especially in light of the comments made to the New
    York Times by Dr. Reeves that reflect an inappropriate bias and undermine
    others' CFS research.

    Recommendation 3:
    The CFSAC objects to CDC's continued use of the inadequate and inappropriate
    2005 "empiric" research definition for CFS. It recommends that CDC abandon
    the empiric case definition and the fundamentally incorrect
    conceptualization of chronic unwellness as being equivalent to CFS
    incorrect.

    Recommendation 4:
    The CFSAC has significant concerns about the CDC's five-year plan. In
    particular, the priorities articulated in its recommendation of May 2009
    have not been adequately captured in the latest draft. The CFSAC renews its
    recommendation that CDC prioritize: identification of biomarkers and (viral)
    etiology of CFS; partnership with organizations representing CFS scientific
    expertise to create guidelines for adult and pediatric management; provide
    web based guidelines for CFS management given our current state of knowledge
    and expert opinion; and provide comprehensive information about CFS in
    partnership with CFS experts to the scientific community, medical and mental
    health providers, educational institutions and the public for both adult and
    pediatric CFS through DHHS resources. CDC's continued use of the inadequate
    and inappropriate 2005 "empiric" research definition for CFS. It recommends
    that CDC abandon the empiric case definition and the fundamentally incorrect
    conceptualization of chronic unwellness as being equivalent to CFS
    incorrect.
    ---------

    December edition of CFIDSLink:
    http://www.cfids.org/archives/2006-2010-cfidslink/december-2009.asp
  2. markmc20001

    markmc20001 Guest

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    thanks tom

    hey Tom,

    your wording for the directions was a bit confusing (could be me and my brain frog), but after I clicked the link in your post, I could see Kathleen seblius's name. I clicked her name, and bingo everything was filled out. All I had to do was fill in a couple of brief sentences. Smooth and easy. Thanks for setting that up.

    Thx
    Mark
  3. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Great TomK --- thank you so much!!

    and Mark you spurred me on to do it right now when you explained how easy it was. :)

    Check out my new Sig. :) Thank you TomK for bringing this to our attention. I would have posted the 2nd link but it doesn't work from a direct link, you have to go to the link I give and click the word Go! Probably because the CAA wants this linked to them.... oh hey! the CAA is following through with trying to get the CFSAC Recommendations implemented. Well alright!

    tee
  4. Dolphin

    Dolphin Senior Member

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    Thanks for the feedback, Mark.

    Apologies if it was confusing. I sent this to a few places. If you have tips about simpler instructions, feel free to let me know and I'll post that to the same places - gives me an excuse to do it again.

    Anyway else is free to give their own tips.
    Or is it simply "click on the first link and go from there"?
    I'm not from the US so can't follow it all the way through myself.
  5. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Tomk, thanks for pointing out that amazing resource! I had no idea it was available. Perhaps a new thread should be started, so folks know it's about more than just the CFSAC recommendations?
  6. Dolphin

    Dolphin Senior Member

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    Thanks for the positive feed back.

    Sounds good. Perhaps somebody from the US (like yourself?) could do it - I'm not from the US so generally don't use it as it is about contacting US politicians, officials, etc. Also I sometimes post the same message on a few forums while it might stand out more if somebody else did it.

    ETA: I see you have already done it - well done
  7. calzy

    calzy Senior Member

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    Naples Florida
    :mad:DONE..come on guys..shout from your beds, I just did.

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