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Article: Taking Back the CFSAC

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 18, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Sing

    Sing Senior Member

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    Thank you, Cort! Is this ever important. I hope everyone who reads this posts written testimony to the CFSAC this week, addressing the need for a renewal of their charter and for the specific terms you outline. Let's keep this front and center all week, in order of importance.

    Sing
  3. Kati

    Kati Patient in training

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    What Sing said. Scary times.
  4. Cort

    Cort Phoenix Rising Founder

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    It is our one single 'in' to the feds - and they count everything - the number of people watching the video, the amount of the public testimony they receive, the number of people attending...if we can get a good number of e-mails in there we can really help them out. In this instance I think quantity is quite important!
  5. Dreambirdie

    Dreambirdie work in progress

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    Yes, we need to bump this up and keep it at the top of the new posts.
  6. starryeyes

    starryeyes Senior Member

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    Thank you for writing this article Cort and for highlighting what we need to request from the CFSAC.

    What is the reason that the CFSAC went from 2 days to 1?

    teej
  7. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Thank you Cort for writing this.

    So no personal stories or other types of comments?
  8. HowToEscape?

    HowToEscape? Senior Member

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    1. When is the meeting?
    2. What is the CFSAC's current charter?
    3. What is the agenda, and are comments required to be consonant with the agenda?
  9. Cort

    Cort Phoenix Rising Founder

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  10. Cort

    Cort Phoenix Rising Founder

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    In fact here's the Charter:

    Chronic Fatigue Syndrome Advisory Committee

    Purpose

    The Chronic Fatigue Syndrome Advisory Committee (formerly known as the Chronic Fatigue Syndrome Coordinating Committee) was established to provide science-based advice and recommendations to the Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS).

    Authority

    42 U.S.C. 217a, Section 222 of the Public Health Service Act, as amended. The Committee is governed by the provision of the Federal Advisory Committee Act, as amended (5 U.S.C. Appendix 2), which sets forth standards for the formation and use of advisory committees.

    Function

    The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic and research communities about chronic fatigue syndrome advances.

    Structure

    The Committee shall consist of 11 members, including the Chair, appointed by the Secretary or the Secretary’s designee. Of the 11 members, 7 shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to chronic fatigue syndrome; 4 shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS. All members of this Committee are classified as special Government employees (SGEs).

    In addition, the Committee shall include 5 non-voting ex officio members: a representative from the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Health Resources and Services Administration (HRSA), the National Institutes of Health (NIH), and the Social Security Administration (SSA); and any additional employees of the United States Government that the Secretary (or designee) determines necessary for the Committee to effectively carry out its function.

    Members shall be appointed to serve a term of four years. Terms of more than two years are contingent upon the renewal of the Committee’s charter by appropriate action prior to its expiration. A member may serve no more than 180 days after the expiration of the member’s term if a successor has not taken office. A member who has served on this Committee cannot be considered for reappointment to the Committee for a period of one year after the expiration date of the member’s term of office, including any extensions.

    If a vacancy occurs among the appointed members, the Secretary (or designee) shall make an appointment to fill the vacancy within 90 days from the date the vacancy occurs. Any individual who is appointed to fill a vacancy for the unexpired term of a member shall be appointed only for the remainder of that term.

    As necessary, the Committee may establish standing and ad hoc subcommittees composed of members of the parent committee, assemble ad hoc working groups, convene conferences and workshops, and seek advice from non-member special consultants, with the approval of the Secretary (or designee). A quorum for each subcommittee/working group shall be three. The DHHS Committee Management Officer shall be notified upon establishment of each standing subcommittee and shall be provided with information on its name, membership, function, and estimated frequency of meetings.

    The advice of a subcommittee shall be reported to the parent committee. The full committee shall review reports and any recommendations made by the subcommittees. The Committee will discuss their findings at a public meeting, at which time the full committee will determine the appropriate action.

    Management and support services shall be provided within the Office of Public Health and Science (OPHS), with direction and guidance from the Assistant Secretary for Health. The OPHS with its expertise in coordinating federal activities and its advisory role to the Secretary will:

    Assure coordination and communication for the Chronic Fatigue Syndrome Advisory Committee and HHS agencies.
    In coordination with the Committee Chair, act as the Committee liaison to HHS; other government agencies; the CFS biomedical, academic, and research communities; the public; and other non-governmental entities.
    Meetings

    Meetings of the full Committee shall be held not more than two times a year. Meetings shall be held at the call of the designated Federal officer (DFO), who is responsible for developing the meeting agenda. Development of the meeting agenda may be done in collaboration with the Committee Chair. The DFO or other official to whom the authority has been delegated shall be present at all meetings of the full Committee and any subcommittees/working groups that have been assembled to assist this Committee. A quorum for the conduct of business by the full Committee shall consist of a majority of the Committee’s voting members.

    Meetings shall be open to the public except as determined otherwise by the Secretary (or designee), in accordance with the guidelines under Government in the Sunshine Act at 5 U.S.C. 552b(c) and the Federal Advisory Committee Act. Notice of all meetings shall be given to the public.

    Meetings shall be conducted and records of the proceedings kept, as required by applicable laws and Departmental policies.

    Compensation

    Members shall be paid at a rate not to exceed $200 per day, plus per diem and travel expenses, as authorized by Section 5703, Title 5 U.S.C., as amended, for persons employed intermittently in the Government service. Members who are officers or employees of the United States Government shall not receive compensation for service on the Committee.

    Annual Cost Estimate

    Estimated annual cost for operating the Committee, including compensation and travel expenses for members, but excluding staff support is $98,200. The estimate of annual person-years of staff support required is 1.5, at an estimated annual cost of $70,095.

    Report

    When it is determined that a meeting shall be closed or partially closed to the public, as determined by the Secretary (or designee), in accordance with Government in the Sunshine Act at 5 U.S.C. 552b(c) and the Federal Advisory Committee Act, then a report shall be prepared that will contain, at a minimum, a list of members and their business addresses, the Committee’s functions, dates, places of meetings, and a summary of committee activities and recommendations made during the fiscal year. A copy of the report shall be provided to the Department Committee Management Officer.

    Termination Date

    Unless renewed by appropriate action prior to its expiration, the charter for the Chronic Fatigue Syndrome Advisory Committee will expire on September 5, 2010.

    APPROVED:
  11. Sing

    Sing Senior Member

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    Maybe some of the following information would be helpful. This came from the CFSAC after I sent my letter:

    The next CFSAC meeting will take place on Monday, May 10, 2010. More information is located at: http://www.hhs.gov/advcomcfs/.

    The CFSAC Support Team is currently processing assignment requests for oral comment at the meeting. Assignments are being prioritized for oral comment on the CFSAC charter. More information on the charter is available at: http://www.hhs.gov/advcomcfs/charter/index.html.

    Members of the public wanting to submit written testimony to CFSAC members at the meeting, should, at a minimum, submit one copy of their material to the Executive Secretary at cfsac@hhs.gov, prior to close of business on Monday, April 26, 2010. Submissions should be no more than five (5) pages.
  12. BobM

    BobM

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    Reno, NV
    Cort, CFSAC has Yet to post the Agenda or Give a reply for Public Testimony slots for 3 weeks. They have yet to announce the Five new Members of the CFSAC openings, which they did via their website for previous nominations. Previous nomination links below.
    Appointment of Members April 1, 2007 http://www.hhs.gov/advcomcfs/notices/n040107.html
    Appointment of Members, March 31,2006 http://www.hhs.gov/advcomcfs/notices/n03310.html

    If people write in to give written testimony or just wish to support having CFSAC , I would suggest they ask why these new members have yet to be disclosed. I have also found out that there will not be an update on XMRV. I for one thought the last CFSAC was one of the best meetings I have attended. Not just due to the XMRV SCIENCE publication, but because the Committee had invited Dr. Peterson, Dr. Coffin and Dr. Bell to speak, giving them ample time to speak and discuss CFS, they also invited Annette Whittemore of the WPI to speak since she was attending. There was such a great exchange between the doctors and the CFSAC members.
    I asked the WPI if they would be updating or presenting anything at this meeting and was told no, as there was no invatation extended to them and further that the NCI had not been asked to give any updates.

    Per the Charter, I would think this comes under the Function title:
    The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including: (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas;

    Maybe they have other Doctors and Researchers coming, but based on what we learned at the last meeting how can there be no follow up??? Remember you can write to Wanda Jones the Executive Secretary at cfsac@hhs.gov on any issue re: CFS, but please do so soon.

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