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CFSAC meeting notification: May 10-11, 2011 CFSAC Meeting

Discussion in 'Action Alerts and Advocacy' started by Dx Revision Watch, Mar 23, 2011.

  1. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Also at this URL:

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


    From Tate Mitchell, via Co-Cure:

    http://edocket.access.gpo.gov/2011/2011-6702.htm
    http://edocket.access.gpo.gov/2011/pdf/2011-6702.pdf

    May 10-11, 2011 CFSAC Meeting


    [Federal Register: March 22, 2011 (Volume 76, Number 55)]
    [Notices]
    [Page 15982]
    From the Federal Register Online via GPO Access [wais.access.gpo.gov]
    [DOCID:fr22mr11-88]

    ===========================================
    -----------------------------------------------------------------------

    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 the Assistant Secretary for Health.

    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 Tuesday and Wednesday, May 10 and
    11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10,
    2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.

    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 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 and the
    relevant gaps in knowledge and research about the epidemiology,
    etiologies, biomarkers and risk factors relating to CFS, and
    identifying potential opportunities in these areas; (2) impact and
    implications of current and proposed diagnosis and treatment methods
    for CFS; (3) development and implementation of programs to inform the
    public, health care professionals, and the biomedical academic and
    research communities about CFS advances; and (4) partnering to improve
    the quality of life of CFS patients.

    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 for
    on demand viewing through the CFSAC Web site.

    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 oral
    testimony at the May 10-11, 2011, meeting if pre-registered.
    Individuals who wish to address the Committee during the public
    comment session must pre-register by Monday, April 18, 2011, via
    e-mail to cfsac@hhs.gov. Time slots for public comment will be
    available on a first-come, first-served basis and will be limited to
    five minutes per speaker; no exceptions will be made. Individuals
    registering for public comment should submit a copy of their oral
    testimony in advance to cfsac@hhs.gov, prior to the close of business
    on Monday, April 18, 2011.

    If you do not submit your written testimony by the close of business
    Monday, April 18, 2011, you may bring a copy to the meeting and
    present it to a CFSAC Support Team staff member. Your testimony will
    be included in a notebook available for viewing by the public on a
    table at the back of the meeting room.

    Members of the public not providing public comment at the meeting who
    wish to have printed material distributed to CFSAC members for review
    should submit, at a minimum, one copy of the material to the Executive
    Secretary, at cfsac@hhs.gov, prior to close of business on Monday,
    April 18, 2011. Submissions are limited to five typewritten pages. If
    you wish to remain anonymous, please notify the CFSAC support team
    upon submission of your materials to cfsac@hhs.gov.

    All testimony and printed material submitted for the meeting are part
    of the official meeting record and will be uploaded to the CFSAC Web
    site and made available for public inspection. Testimony and materials
    submitted should not include any sensitive personal information, such
    as a person's social security number; date of birth; driver's license
    number, State identification number or foreign country equivalent;
    passport number; financial account number; or credit or debit card
    number. Sensitive health information, such as medical records or other
    individually identifiable health information, or any non-public
    corporate or trade association information, such as trade secrets or
    other proprietary information also should be excluded from any
    materials submitted.

    Dated: March 18, 2011.
    Wanda K. Jones,
    Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
    [FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]
    BILLING CODE 4150-42-P

    ---------------------------------------------
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  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    thanks for the post, Suzy
     
  3. CBS

    CBS Senior Member

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    Suzy,

    Thanks for the post. Do you know if there will be accommodations for videotaped comments by patients? Written testimony alone does not adequately convey what many of us are going through. That said, unless something changes, I'm not physically able to attend and testify, let alone sit through he rest of the conference.

    Thanks,

    Shane
     
  4. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Hi Shane,

    I'm afraid I don't know whether video testimonies would be accepted or have been accepted in the past.

    I would have thought that if an individual was unable to submit a written testimony or attend in person to give testimony, or to give a 5 minute testimony via phone link, that a five minute video on a DVD ought to be acceptable.

    Can you leave this with me and I will ask someone who has attended these meetings whether this form of submission has been acceptable, in the past.

    If they are unable to answer your query then I guess the CFSAC Secretary would advise you, if approached.

    I'll get back to you on this.

    Suzy
     
  5. Hope123

    Hope123 Senior Member

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    Laurel (don't know her name on the forum) sent in a short video ?last year and her sister read her testimony for her. You can ask Dr. Wanda Jones if they will allow it this time. You can phone-in testimony -- I believe they set aside a time for you and you don't need to sit through the meeting in-person or even online to do it. Last alternative is finding someone to read your testimony for you at CFSAC, which shouldn't be overly difficult.
     
  6. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    @ Shane

    I have passed your enquiry to someone who has attended these meetings as an advocate and to give testimony who has made enquiries of Dr Wanda Jones, the CFSAC Secretary.

    Apparently, Dr Jones has advised my contact that you can submit testimony in the form of disc but you would need to write to: cfsac@hhs.gov immediately in order to get your name down for a slot to testify - she says - even if it is video, there has to be a spot reserved for it.

    Hope this answers your query.

    Suzy
     
  7. justinreilly

    justinreilly Senior Member

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    That's so great to know. Thanks, Suzy.
     
  8. justinreilly

    justinreilly Senior Member

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    Reminder: Written testimony due in a couple of days- Monday, April 18th.

    I submitted this (similar to one I submitted previously; feel free to use in whole or part without attribution):
     
  9. muffin

    muffin Senior Member

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    The Chronic Fatigue Syndrome Advisory Committee Events and Items!

    Posted by Karen Mascuch Ravitz on 16 April

    The Chronic Fatigue Syndrome Advisory Committee will meet on May 10th and 11:
    "http://frwebgate1.access.gpo.gov/cgi-bin/TEXTgate.cgi?WAISdocID=sxS1ji%2F1%2F1%2F0&WAISaction=retrieve"

    The last day to submit your written testimony or request an in-person testimony is MONDAY, the 18th. You do not need to be a US citizen to participate!

    Speak Up About ME inspired tees and buttons are selling; please dont be left out!

    Here are the links, below:

    For Adult CFSAC Participants or anyone who wishes to support the cause:

    One sided Tee shirt:
    "http://www.zazzle.com/cfsac_one_sided_tee_for_adults_tshirt-235803612034563670"

    Two sided Tee shirt with retrovirus message on the back:
    "http://www.zazzle.com/cfsac_two_sided_tee_shirt-235172448071068907"

    NEW!!! Button inspired by Pat Feros NIH Testimony:
    Im worth more than $3.64!
    "http://www.zazzle.com/mcwpa_button_i_am_worth_more_than_3_64-145186034413278844"

    $150 Million for ME/CFS Research Now button:
    "http://www.zazzle.com/mcwpa_funding_button-145448348114878163"

    Please note that there are many tee shirt options available (mens, womans, fitted, loose, short sleeve, long sleeve, etc). For 10% your entire order, use discount code (good through 6/30): 10ZAZZLE2011

    PANDORAs Lobby Day Event Page:
    "http://events.r20.constantcontact.com/register/event?oeidk=a07e3kxr54jb281f146&llr=f4utbb44"

    Speak Up About ME Young Peoples effort initiated by Denise Lopez-Majano and other advocates.
    "http://www.speakupaboutme.org/speak-up"

    Thank You!
    The MCWPA Team :balloons:
     
  10. Nielk

    Nielk

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    Justin,

    Very well put.
    Do you plan to attend?
     
  11. Nielk

    Nielk

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    Does anyone plan to attend?
    I really would like to go but right now I'm going through a crash and can hardly get out of bed.

    Can one decide the las minute to attend or do you have to reserve a space.

    I want to write a letter to them but want to sound as effecyive as possible.
    Anyone have any suggestions as to what the most important points to be are?

    Do you think that personal testimony as to how one suffers through this disease should be included? Like losing you life, friends, money, hope?

    Do they really care about our sob stories?
     

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