tell officials to implement CFSAC recommendations/comment on CDC's plans

Discussion in 'Fibromyalgia Main Forum' started by outofstep, Jun 1, 2009.

  1. outofstep

    outofstep Member

    The CAA has set it up so that we can request implementation of the CFSAC recommendations-remember, for now they're just recommendations-we need to ensure that something is actually done about them! You can also let the CDC know just how you feel about their "5-year plan".

    Go to http://capwiz.com/cfids/home/
    The two that deal with the recommendations are:
    Updated: VIRTUAL LOBBY DAY ACTION #2
    Write to Secretary of Health Sebelius

    Updated: VIRTUAL LOBBY DAY ACTION #3
    Write to the President, VP & Congress

    The one that is for the CDC says:
    Updated: VIRTUAL LOBBY DAY ACTION #4
    Provide comment to CDC on its draft research plan


    They have templates all set up. The one at the very bottom is to thank Dr. Jones for arranging videocast and that's an important one to do as well.
    Let's keep the momentum going and let govt. officials know that we care about these issues!


    These are the CFSAC recommendations in case you haven't seen them yet:

    CFS Advisory Committee Recommendations: May 28, 2009
    Thursday, May 28, 2009 at 8:21pm

    RECOMMENDATIONS FROM THE CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE
    TO THE SECRETARY OF HEALTH & HUMAN SERVICES
    MAY 28, 2009

    Recommendation #1: Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.

    We have heard from the IACFS/ME president who represents the scientific CFS community, call for new leadership within the CDC’s CFS program. We also learned that a CFS patient group has over 1000 signatures asking for a change in leadership at the CDC’s CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership of the CDC’s CFS program. We are concerned with input from these diverse groups. We also felt that the 5-year plan offered at our CFSAC meeting was ambiguous concerning what could be accomplished with available resources, and also seemed to lack a bold vision to significantly advance the field.

    Approved by unanimous vote.


    Recommendation #2: Provide adequate funding to effectively carry out a detailed 5-year plan. This should include immediate progress in these areas:
    Identification of biomarkers and 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

    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

    Approved by unanimous vote.


    Recommendation #3: Establish 5 regional clinical care, research, and education centers which will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational and clinical research on CFS.

    Approved by unanimous vote.

    [This Message was Edited on 06/01/2009]
    [This Message was Edited on 06/02/2009]
  2. simpsons

    simpsons Member