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Protest at Oct. 2011 CFSAC Meeting!

Discussion in 'Action Alerts and Advocacy' started by justinreilly, Sep 12, 2011.

  1. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Val, on mecfsforums is organizing a protest at the next CFSAC meeting. She is very busy with travel, but anyone going to the meeting, pls contact her about the protest!! All you would have to do is stand/sit there outside the building for about half an hour or less so we can record it and put it up on youtube. I have put up some money to help out with expenses.

    Val's contact page:

    Thread on this protest and funding for protests generally:
  2. Cort

    Cort Phoenix Rising Founder

    thanks Justin - this is what we need, I think.
  3. RivkaRivka

    RivkaRivka Senior Member

    i'm really beat, so i can't do much of anything. but in case this to do list is helpful to anyone, here it is. -- rivka


    Written on Sept 12 2011, by Rivka
    Email: Rivka (at) ThatTakesOvaries (dot) org

    Reach out to local ME/CFS groups
    a. Ask: will they join the demo?
    b. Ask: if not, will they help us get the word out for the demo?

    Reach out to have young people with ME/CFS to come to demo
    a. To do this, contact SpeakUpAboutME@gmail.com, kickHeal, what other groups?
    b. Contact local families with kids who have ME/CFS
    c. Ask local ME/CFS groups if they know young people with ME/CFS

    Find out what is needed for permits
    a.Contact city police: ask what permits are needed for us to hold a demonstration with 5-25 people (or whatever you think it will be), in these locations:
    - on the sidewalk in front of the target location (example: a federal site, like the Capitol Hill HHS headquarters)
    - on the sidewalk across the street of the target location (across the street is likely not federal property)
    - in front of the local federal building (example: Boston's federal building, the JFK building)

    If demo is held at a regional gov't office
    a. find out who runs that local HHS or CDC regional office, AND who is in charge of public relations there
    - ask for a meeting with one or both
    - have talking points and a letter ready to give them if you meet and even if you don't get to meet face to face
    b. when you ask for a meeting, and/or once you secure a meeting, you need to decide in advance if you want to tell them about yr demo or not. There are pros and cons to telling them and pros and cons to not telling them until you are actually there.

    Media outreach
    a. Send press release via email, and also call all local newspapers and radio (ask rivka for sample press release). Pitch to health reporters, living reporters, city desks. Call the newspaper's main number and ask who covers those beats/sections, and who is the editor of each section. Pitch to both the reporter and her editor, separately.
    b. Try to pitch to reporters live, or leave your live pitch on their voicemail. In other words, don't just rely on emailing yr pitch, but do email it, too.
    c. Make sure you have a compelling story (example: "I've been bedridden and homebound 20 years with an illness that 1 million Americans have but that gets almost no funding for research." Or "We are a mother and daughter team protesting together in hopes to secure funding for the sick daughter who has been bedridden 10 years, along with almost 1 million other Americans."
    d. Contact the reporters you want to reach 3 times. They are busy and I have sometimes gotten a yes on the 3rd try.
    e. Consider a teleconference (this is when you have a press conference via phone; the press calls in to ask questions of a panel of patients, family members, expert doctors or whomever you decide to have present

    Reach out to other groups to invite them to join us (this is a big task. Plus, be ready for rejection.)
    a. ADA groups
    b. HIV/AIDS
    c. Autism groups

    Prepare one pager
    a. To give gov't official you meet with (or dont get to meet with, but you leave the letter/one pager at the front desk for them)
    b. Same or similar one pager can be given to passers-by (for the public), the press, and for mailing to the HHS officials later.

    Make homemade banners or signs with compelling messages
    a. Rivka can send her 25 foot banner to the demo organizer, too

    Accomodating disabled people
    a. Consider doing what the London protesters did in 2010: organize vans to pick up folks from their homes and bring them to yr demo
    b. Consider having folding chairs, wheelchairs, stretchers there for folks to sit and rest. Decide if this is a good or bad thing in terms of PR.

    Consider media drawing tactics
    a. Using the 25 foot banner
    b. Die-in or lie-in (with pillows? Pajamas?) (be ready for risking arrest)
    c. blocking doors (be ready for risking arrest)

    Videotape and get on YouTube
    a. Have at least two video cameras (flip cameras are great) and two camera people, in case one fails. Rivka has a flip camera that can be sent to the demo organizer to use and then return to Rivka.
    b. Videotape the images and audio you want (like your prepared or spontaneous speech) twice, since audio or lighting or something will likely fail in one of them
    c. Edit it to less than 5 minuts and put on youtube
    d. Send a link to the video to gov't officials
    *GG* and ahimsa like this.
  4. pamb

    pamb Senior Member

    Edmonton, AB, Canada
    Rivka, you are brilliant.
    Jason, thanks for working with Val to get this rolling.
  5. *GG*

    *GG* senior member

    Concord, NH
    Any movement on this front?

  6. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Nope. Val can start working on this only in Oct. Noone else yet has stepped up to help lead afaik.
  7. Andrew

    Andrew Senior Member

    Los Angeles, USA
    It's September 19 and they have not announced an October meeting. I wonder what the deal is.
  8. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Just checked and still nothing at all posted about October CFSAC meeting on its website. Pretty ridiculous.
  9. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I'm afraid that with Wanda Jones gone, we are not going to have the same kind of access or efficiency we've grown used to.
  10. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    I hope they will not replace her and Dennis Mangan with people who are less helpful for us. Are the Coalition 4 ME/CFS and other US orgs keeping an eye on this and trying to be in contact with the people making these decisions? I hope so.
  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    As members of the public and patients who attend CFSAC meetings need to make arrangements for travel and escorts and as suggestions for agenda topics will need to be submitted by a specific date and background materials prepared, I have today made a general enquiry of Dr Nancy Lee (who replaces Dr Wanda Jones) and copied to CFSAC Chair, Dr Chris Snell, enquiring whether dates for the fall CFSAC meeting been agreed upon yet.

    I will report back when I have received a response from Dr Lee.

    Minutes, background materials, Oral Testimony and Written Testimony, Recommendations and the videocast of the May 10-11 meeting are available from this page of the CFSAC site:


    "Follow-Up and Comment to the ICD-9-CM Coordination and Maintenance Committee Meeting held September 9-14, 2011 (see pages 7,9,& 10)" [PDF] is also posted on the CFSAC site here:http://www.hhs.gov/advcomcfs/

    PDF: http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011fpdf.pdf

    Suzy Chapman
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    If you look at the meetings page, previous fall meetings have taken place in September, October and as late as the end of November. So it does not surprise me that dates have not yet been announced.

  13. Andrew

    Andrew Senior Member

    Los Angeles, USA
    It's still good that you contacted them. Let's them know we care about what happens. I hope they don't stop the live broadcast with phone-in testimony. I'm pretty sure Wanda Jones was the one who made this all happen.
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I'll post when I have a response, Andrew. Folk need as much notice as possible of these meetings. Given that no call has gone out yet for agenda items, the Committee will be pushed, I would think, to hold a meeting in October. I've just looked back through my files and the official notice for the May meeting was dated March 18 and was circulated by Marc-Alexander Fluks on March 22 - around 7 weeks prior to the May 10-11 meeting.

    If a similar period of notice is required for the fall meeting and a notice were issued in the next few days, we'd be looking at the second half of November for the scheduling of a meeting. And yes, I hope the live broadcast, the phone-in testimony and the videocasts will be retained under the Executive Secretariat of Dr Nancy Lee, who has taken over from Dr Jones. If I am advised that no notice is in the immediate offing, I will try at least to establish a meeting date.

    This is a copy of the notice that was issued for the May meeting.

    Source: US Federal Register
    Volume 76, Number 55, Page 15982
    Date: March 22, 2011

    URL: http://frwebgate3.access.gpo.gov/cgi-bin/TEXTgate.cgi?WAISdocID=MTDX0H/0/1/0


    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

    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.

    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

    The agenda for this meeting is being developed. The agenda
    will be posted on the CFSAC Web site,
    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

    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-

    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

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

    (c) 2011 Federal Register
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I've had a look at the Federal Register Notice: meeting announcement on the CFSAC site for last year's fall CFSAC meeting.

    Although there was a 7 week notice period for the May 2011 meeting, the notice for the October 2010 meeting held on Wednesday, October 13 and Thursday, October 14, with CFSAC Subcommittees scientific review sessions on Tuesday, October 12, the Federal Register notice is dated September 8.

    So last year, the public was given just over 4 weeks notice of the meeting date with instructions and dates for submitting written testimony, distribution of printed materials, attendance information, registration to give personal testimony and so on. I can't find a date for when the Agenda for last year's October meeting was issued.

    I've had no response yet from Dr Lee, as yet, but given that we are nearly at the end of September, I suspect we may be looking at an early to mid November meeting, this year, but I don't know.

  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    I have received a response from Dr Lee:


    Thanks for your request. The dates will be posted on our website by the end of this week, if not before.



    Nancy C. Lee, MD
    Deputy Assistant Secretary for Health-Women's Health
    Director, Office on Women's Health/OASH/OS/DHHS
  17. Andrew

    Andrew Senior Member

    Los Angeles, USA
    The notice is up now.

    See this link: http://www.hhs.gov/advcomcfs/index.html
  18. Jill McLaughlin

    Jill McLaughlin

    Thanks Andrew. ME advocates need to be there. And protest
    code changes.

  19. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I've been thinking about this more. I don't think protesting in front of a Holiday Inn will play very well with the media. It would be much better to do it in front of the CDC building, not matter what the date.
  20. Dreambirdie

    Dreambirdie work in progress

    N. California

    I agree with you Andrew. The CDC makes much more sense to me too.

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