Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 12, 2012.

  1. simpsons

    simpsons Member instructions below.

    please guys this is important to link in so the gov can see that people are watching.

    Chronic Fatigue Syndrome Advisory
    Committee (CFSAC) Spring 2012
    Meeting - Wednesday and Thursday,
    June 13 and 14

    The Health and Human Services (HHS) Department
    has issued a notice that the Chronic Fatigue
    Syndrome Advisory Committee (CFSAC) will hold a
    meeting on Wednesday, June 13, 2012 and
    Thursday, June 14, 2012 from 9:00 a.m. until 5:00

    This is the only federal cross-agency committee
    focusing on Chronic Fatigue Syndrome (CFS).

    The CFSAC, established in September 2002,
    advises and makes recommendations to the
    Secretary of Health and Human Services through
    the Assistant Secretary for Health on a wide range
    of issues affecting individuals with CFS.

    These include things such as the current state of
    knowledge and research; diagnosis and treatment
    of CFS; educational programs for healthcare
    professionals and the public; and developing
    strategies to improve the quality of life of CFS

    It is the primary means by which CFS-related
    offices and programs at the Centers for Disease
    Control (CDC), National Institutes of Health (NIH),
    and members of the health care and patient
    communities communicate with one another.

    The Agenda for the upcoming meeting can be
    viewed at: CFSAC Spring 2012 Meeting.

    The first day will pay special attention to Childhood
    CFS with a presentation in the morning by Peter C.
    Rowe, M.D., from the John Hopkins Children's
    Center Division of General Pediatrics, and Gail
    Houle, Ph.D., Associate Division Director at the
    Office of Special Education Programs, Department
    of Education.

    A panel discussion on CFS and children will take
    place during the afternoon session.

    On the afternoon of the second day there will be a
    presentation on ME/CFS organizations, with a
    discussion by Committee Members and
    representatives of ME/CFS organizations.

    This meeting will be live-video streamed - a service
    that was reinstated for this meeting as a result of
    many requests from patients and their families
    since it was not available for the previous meeting.

    It is very important for everyone to take advantage of
    this service (in view of ongoing budget pressures)
    and show interest in this service by having a
    significant number of people "tune in" during the
    live meetings.

    People should make an effort to watch (or at least
    tune into) these meetings in order to preserve this
    opportunity for all going forward.

    On the actual day of the meeting, to view the
    live-streaming, click on Live Videocast or key in
    following web address:

    The videocast of the meeting will be archived
    through the CFSAC website and should be
    available for viewing a week or two after the

    For the complete HHS announcement and details,
    click on Meeting of the Chronic Fatigue Syndrome
    Advisory Committee.

    Massachusetts CFIDS/ME & FM Association

    PO Box 690305
    Quincy, MA 02269-0305
    United States

  2. bigmama2

    bigmama2 New Member

    thanks for the reminder. yes, let them know that we CFS patients exist and we are watching!

    i am watching now- it's easy.

  3. mbofov

    mbofov Active Member

    for posting the link. I've watched in previous years but totally spaced out this year's - I just logged on, it was easier than pie -

  4. simpsons

    simpsons Member

    your are welcome it is very important to watch, and let them know we are watching.

    they log all the numbers and the right to have this online webcast was hard fought for by our patient advocates.

    If we are not a part of the solution then we are a part of the problem. Even those v v ill can register interest and tune in, to show we are interested in what they are discussing.

    as mary says its as easy as pie.

    hope you are ok mary?

    simpsons x

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