DO YOU KNOW THIS EXIST??????FOR CFS

Discussion in 'Fibromyalgia Main Forum' started by suzetal, Sep 27, 2006.

  1. suzetal

    suzetal New Member

    I had no idea about this committee.

    Sue

    CFSAC: Chronic Fatigue Syndrome Advisory Committee
    In 1996, Secretary for Health Donna Shalala chartered a special committee to advise the Department of Health and Human Services (DHHS) on policy regarding chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS. This committee, known as the DHHS Chronic Fatigue Syndrome Coordinating Committee (CFSCC), brought together officials representing various health agencies together with seven appointed members of the public to improve coordination of federal CFS programs.


    A year 2000 review of federal activities on CFS conducted by the General Accounting Office prompted several changes. Among them was the replacement of the CFSCC with a new committee, the CFS Advisory Committee (CFSAC), whose structure more closely matched other DHHS advisory bodies. There was a long delay between the last meeting of the CFSCC (January 2001) and the first meeting of the CFSAC (September 2003). This was largely due to the change in presidential administrations, 9-11 and other consuming world events.

    Committee Membership
    The federal charter for the CFSAC dictates the participation of five federal agencies and the appointment of 11 members of the public , chosen from two categories of membership.

    Members of the public provide the following representation. Each member has one vote on matters before the committee:

    Biomedical researchers (7 appointees)
    Disability or clinical care expertise and/or patient advocates (4 appointees)

    The following health agencies select representatives to participate in committee meetings, but cannot vote on matters before the committee:

    National Institutes of Health (NIH)
    Centers for Disease Control and Prevention (CDC)
    Food and Drug Administration (FDA)
    Health Resources and Services Administration (HRSA)
    Social Security Administration (SSA)

    Each public appointee to the committee serves for a limited term of one, two or three years. The 11 members of the public are nominated by the public, selected by DHHS staff, and appointed by the Secretary for Health. Nomination periods are announced periodically in the Federal Register.


    The Secretary selects one of the public appointees to serve as chairman of the committee. A federal employee is assigned to be the Executive Secretary, serving as a contact point and helping to plan meetings, facilitate discussion and manage the selection of new appointees.

    Communicating With the CFSAC
    The CFSAC communicates with the public through two mechanisms: an Internet listserv and a Web site. You can subscribe to the listserv at http://list.nih.gov/, The web site - http://www.hhs.gov/advcomcfs/index.html houses a committee roster, minutes of past meetings, the committee charter and other documents of interest.

    Meetings
    By law, all meetings of the full committee are open to the public and must be announced with ample advance notice in the Federal Register. Meetings generally last one full day, occur 2-4 times a year, and are usually held in Washington, D.C. Opportunities to testify before the CFSAC are usually provided to members of the public. At times, public testimony will be requested on specific topics to assist the committee in its work. Members of the Association's Grassroots Action Committee Listserv are notified of meetings and the opportunity to present to the CFSAC.

    The CFIDS Association of America participates in all CFSAC meetings and regularly presents testimony. Association reports on past meetings are sent out through our listserv and are included in CFIDSLink, our monthly e-newsletter.

    Activities
    The CFSAC (and before it, the CFSCC) has addressed the expansion of CFS biomedical research, the name change, pediatric CFS, disability and health care provider education. Working groups may extend the committee's ability to gather information, develop proposals, and plan other activities. On August 23, 2004, the committee sent a set of 11 recommendations to the department, urging action on several of these issues.

    Learn More About the CFSAC
    The CFIDS Chronicle, mailed quarterly to Association members, reports on CFSAC meetings and other committee-related activities. You can find these reports in the "DC Dispatch" feature and on our Website.





  2. NancyMystic

    NancyMystic New Member

    Yes, in fact it was just renewed, after a letter-writing campaign to the Secretary of Health.

    From the CFIDS Association of America website (check this site for info, education and advocacy) :

    "We are delighted to announce that the CFS Advisory Committee has just been renewed for two years, authorized by Secretary of Health Mike Leavitt and effective September 5, 2006.

    Such disease-specific committees are fairly rare and this one has been important to the ongoing coordination of federal research and education efforts, as well as providing CFIDS advocates with the opportunity to provide input to decisions that affect them.

    Thanks to all the advocates – including Lobby Day participants, grassroots advocates and 41 members of Congress – who wrote to Secretary Leavitt asking him to renew the charter."

    http://www.cfids.org/advocacy/CFSAC.asp
  3. webintrig

    webintrig New Member

    Yeah, I emailed Mike a thank you letter for all his hard work and for sticking with it another term..not exact words..but fairly close...

    I was blown away by this info. you provide here but happy in knowing that the government is getting involved then maybe more research and awareness will get out there.

    I am wondering if you can listen to these meetings via computer?

    Does anyone know?

    What website again can we go to to get the info. and dates and times and what took place in passed meetings?

    Not able to retain to much info. sorry..lol...brainfog

    Can you please tell me?

    Thanks...
  4. suzetal

    suzetal New Member

    This one has lots.
    cfids.org

    Sue
  5. webintrig

    webintrig New Member

    I think I will go and check it out ....

    Thankx again,
  6. mollystwin

    mollystwin New Member

    Since March. I get a copy of the CFIDS chronicle which has good information. You have to pay a membership fee for a year I think.

    I'm learning more everyday about this illness. I am now reading "Oslers Web". It's a great book on the history of CFS from mid 80's to mid 90's. There is another thread about this book if anyone is interested in finding out more about it. It's a fascinating read.