Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Chronic Fatigue Syndrome Advisory Committee (CFSAC)-CONTACT Kathleen.Sebelius@hhs.gov

Discussion in 'Action Alerts and Advocacy' started by muffin, Sep 10, 2010.

  1. muffin

    muffin Senior Member

    Messages:
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    CFSAC is upon us again. As in past years the problem with this meeting has been that the DHHS Secretary never bothers to look at the recommendations from this meeting. S/He does not look and they do not sign off on the recommendations and thus, we see the same recommendations, complaints, ideas, year after year after year. Too many hardworking people and the very sick show up for this meeting every year and nothing comes of it. This is an enormous waste of time, energy, money and quite frankly, yet another example of the Federal government NOT doing their job.

    I suggest emailing Secretary Sebelius and asking that she read and sign-off on the 2010 CFSAC Recommendations. Dr. Wanda Jones told me that the recommendations are placed on each Secretary's desk, never read and never signed off on. This too must come to an end.

    After sending in your own statements to CFSAC, email Sebelius and update her on what CFSAC is doing, how important this meeting and recommendations are to the CFS/ME sick as well as the general public (due to the newly discovered Retrovirus family) and ask/insist that she read and sign-off on the CFSAC recommendations this year. Give her background on what has/is going on with CFS/ME and the retrovirus, the nation's blood supply, and the critical need for immediate major funding and grants to private researchers (WPI, Klimas, others) as well as real Federal government research that yields quick clinical trials and no more fooling around on yet more replications studies or foot dragging.

    *** Again, remember that Sebelius works for you. You pay her salary. Make her do her job. I do think that hitting her with a ton of emails requesting that she pay attention to the CFSAC Recommendations might get her to actually do her job.

    Kathleen.Sebelius@hhs.gov



    http://www.hhs.gov/advcomcfs/

    Secretary Sebelius --- Secretary Kathleen Sebelius - DHHS (or shortened to HHS): Kathleen.Sebelius@hhs.gov

    http://www.dhhs.gov/

    Remember that DHHS is the "owner" of NIH, CDC, and the following Subordinate Organizations:
    Administration for Children and Families
    Administration on Aging
    Agency for Healthcare Research and Quality
    Agency for Toxic Substances and Disease Registry
    Centers for Disease Control and Prevention
    Centers for Medicare and Medicaid Services
    Food and Drug Administration
    Health Resources and Services Administration
    Indian Health Service
    National Institutes of Health
    Program Support Center
    Substance Abuse and Mental Health Services Administration

    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:
    factors affecting access and care for persons with CFS;
    the science and definition of CFS; and
    broader public health, clinical, research and educational issues related to CFS.
    Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women's Health, which is part of OASH.
    Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.

    Roster of Committee Members
    Voting Members
    Chair
    Christopher Snell, PhD
    Stockton, CA
    Term: 04/01/07 to 04/01/11
    Dane B. Cook, PhD
    Madison, WI
    Term: 05/10/10 to 05/10/14
    Ronald Glaser, Ph.D
    Columbus, OH
    Term: 04/01/07 to 04/01/11
    Arthur J. Hartz, MD, PhD
    Iowa City, IA
    Term: 04/01/07 to 04/01/11
    Eileen Holderman
    Galveston, TX
    Term: 05/10/10 to 05/10/14
    Michael Houghton, PhD
    Danville, CA
    Term: 05/10/10 to 05/10/14
    Leonard Jason, PhD
    Chicago, IL
    Term: 04/01/07 to 04/01/11
    Steven P. Krafchick, MPH, JD
    Seattle, WA
    Term: 07/01/10 to 07/01/14
    Nancy Klimas, MD
    Miami, FL
    Term: 04/01/07 to 04/01/11
    Susan M. Levine, MD
    New York, NY
    Term: 05/10/10 to 05/10/14
    Gailen Marshall Jr., MD, PhD
    Jackson, MS
    Term: 05/10/10 to 05/10/14
    ------------------------------------------------------------------
    [Federal Register: September 8, 2010 (Volume 75, Number 173)]
    [Notices]
    [Page 54636-54637]
    From the Federal Register Online via GPO Access [wais.access.gpo.gov]
    [DOCID:fr08se10-81]

    -----------------------------------------------------------------------

    DEPARTMENT OF HEALTH AND HUMAN SERVICES
    Meeting of the Chronic Fatigue Syndrome Advisory Committee

    AGENCY: Department of Health and Human Services, Office of the
    Secretary, Office of Public Health and Science.

    ACTION: Notice.

    -----------------------------------------------------------------------

    SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S.
    Department of Health and Human Services is hereby giving notice that
    the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a
    meeting. The meeting will be open to the public.

    DATES: The meeting will be held on Wednesday, October 13 from 9 a.m.
    until 5 p.m. and Thursday, October 14, 2010 from 9 a.m. until 4 p.m.
    CFSAC Subcommittees will hold scientific review sessions on Tuesday,
    October 12 from 8:30 a.m. until 5 p.m.


    ADDRESSES: Department of Health and Human Services; Room 800, Hubert H.
    Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.
    For a map and directions to the Hubert H. Humphrey building, please
    visit http://www.hhs.gov/about/hhhmap.html.

    FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; Executive
    Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of
    Health and Human Services; 200 Independence Avenue, SW., Hubert
    Humphrey Building, Room 712E; Washington, DC 20201. Please direct all
    inquiries to cfsac@hhs.gov.

    SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
    The Committee was established to advise, consult with, and make
    recommendations to the Secretary, through the Assistant Secretary for
    Health, on a broad range of topics including (1) The current state of
    the knowledge and research about the

    [[Page 54637]]

    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 advances in chronic fatigue syndrome.
    The agenda for this meeting is being developed. The agenda will be
    posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is
    finalized. The meeting will be broadcast over the Internet as a real-
    time streaming video. It also will be recorded and archived on the
    CFSAC Web site for on demand viewing.


    CFSAC Subcommittees will convene scientific review sessions on
    Tuesday, October 12. The purpose of these sessions is to update the
    latest developments in etiology, natural history, clinical trials, and
    related areas for chronic fatigue syndrome. The public is welcome to
    attend these sessions, which are not a formal part of the Advisory
    Committee meeting. These sessions will be broadcast over the Internet
    as a real-time streaming video. It also will be recorded and archived
    on the CFSAC Web site for on demand viewing. An agenda will be posted
    on the CFSAC Web site when it becomes available.

    Public attendance at the meeting is limited to space available.
    Individuals must provide a government-issued photo ID for entry into
    the building where the meeting is scheduled to be held. Those attending
    the meeting will need to sign-in prior to entering the meeting room.
    Individuals who plan to attend and need special assistance, such as
    sign language interpretation or other reasonable accommodations, should
    notify the designated contact person at cfsac@hhs.gov in advance.

    Members of the public will have the opportunity to provide comment
    at the October 13-14 meeting if pre-registered. Individuals who wish to
    address the Committee during the public comment session must pre-
    register by Friday, September 17, 2010, via e-mail at cfsac@hhs.gov.
    Time slots for public comment will be available on a first-come, first-
    served basis. Public comment will be limited to five minutes per
    speaker; no exceptions will be made. Individuals registering for public
    comment should submit a copy of their testimony in advance to
    cfsac@hhs.gov, prior to the close of business on Friday, September 17,
    2010.

    Members of the public who wish to have printed material distributed
    to CFSAC members for review should submit one copy of the material to
    the Executive Secretary, at cfsac@hhs.gov, prior to close of business
    on September 17, 2010. Submissions are limited to five typewritten
    pages.
    Any written testimony submitted after this date will be
    available for inspection on-site and will be posted to the Web site
    after the meeting.

    If you do not submit your written testimony prior to the close of
    business Friday, September 17, 2010, you may bring a copy of your
    written testimony to the meeting and present it to the CFSAC Executive
    Secretary. Your testimony will be included in a notebook that will be
    available for viewing by the public on a table at the back of the
    meeting room.

    Please ensure that written testimony does not include any personal
    information including your personal mailing address and that it
    includes only your name, if you wish to be identified
    . If you wish to
    remain anonymous, please notify the CFSAC Executive Secretary upon
    submission of the materials to cfsac@hhs.gov.

    Dated: August 31, 2010.
    Wanda K. Jones,
    Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
    [FR Doc. 2010-22393 Filed 9-7-10; 8:45 am]
    BILLING CODE 4150-42-P
     
  2. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    10
    CFSAC is not being heard if the Secretary does not read/sign off on recommendations

    Help Dr. Wanda Jones get the recomendations read by Sebelius and signed-off on by emailing Secretary Sebelius.

    These people do not bother to read the recommendations or work that comes out of the CFSAC meetings. Email Sebelius and ask her to read the recommendations and sign off on them.
    Want to keep seeing the same things over and over evey single damn year? Then get the Secretary to finally LOOK at this stuff and sign off on it.

    Otherswise, what really is the point of all those people travelling to DC to sit there and listen to the everyone preach to the same choir every year?
     
  3. *GG*

    *GG* Senior Member

    Messages:
    6,111
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    Concord, NH
    Hey Muffin, from what you describe, it does sound like an exercise in futility?! So what do we need to do?
     

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