1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 12, 2010.

  1. citybug

    citybug Senior Member

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    Another story angle if papers contact you could be that CDC is about to pick a new director for the division that oversees ME/CFS research. Patients want them to take a new direction ...
  2. Cloud

    Cloud Guest

  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Can someone post this on this forum? I cannot participate in any more forums, just to much for me with all my other demands. Thanks for the consideration.

    Does someone have an easy way to find local newspapers on the net and then I could submit emails. I have seen something like this in the past!

    GG
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    let

    I wanted to let everyone know that we will soon be putting out options of future actions for patients to vote on.

    Thanks

    Tina
    MCWPA Team
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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  7. muffin

    muffin Senior Member

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    USA!
    As Tina has posted, there are many great ideas out there by the patients that need to be read, commented on, then voted on. You have until Sunday! Please jump in and help us keep pushing.

    We did have some impact from the Washington Post Advert and the worldwide Press Release. Our Press Release with a really great photo was on the Times Square (NYC) billboard running on/off for three days! So, people in NYC were able to read about ME/CFS and the Retrovirus.
    We also have had impact on the US Feds.
    I also think that the UK people are running scared as sin since they put out those FOUR bogus "studies" in one day on that fake Retro online "journal". Four in one day? Running scared because they too were most aware of the AD and PR and the fact this has emboldened the people of the UK to be mad as hell and to demand big changes. Wessely knows the time is coming to an end that he can run the show in the UK, so... let's PUSH really hard to get rid of Weasel and get the folks of the UK real medical care and not psych wards.

    Hit the site Tina has posted above. Also, go to our website http://www.mcwpa.org -- Great stuff out there.
  8. leela

    leela Slow But Hopeful

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    Does anyone have a photo of the NYC billboard?
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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  10. leela

    leela Slow But Hopeful

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    Wow! Impressive...
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well

    Well, there's more to come, with patient support. You took the survey, didn't you?

    Tina
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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  14. muffin

    muffin Senior Member

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    Hit Tina's website address and read. Be creative and get us a great public service announcement! Win money for you and your charity.

    Please: All super creative types THIS IS YOUR TIME to come up with a really strong, powerful hard-hitting Public Service Announcement that gets the REAL information out. Hit Tina's site and give it a go.

    What do YOU think the public MUST KNOW about us??? Can you get the powerful and critical info out there in a short period and really hit the sweet spot???

    Where is the person who did my ultra favorite video on the ME/CFS timeline??? Where are you?? Won't YOU give it a quick shot please????
  15. muffin

    muffin Senior Member

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    Chronic Fatigue Syndrome Advisory Committee (CFSAC) May 10-11, 2011

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

    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.
    Spotlight

    May 10-11, 2011 CFSAC Meeting

    Contact Us
    For further information, contact:
    Chronic Fatigue Syndrome Advisory Committee (CFSAC)
    Office of the Assistant Secretary for Health
    U.S. Department of Health and Human Services
    Hubert H. Humphrey Building, Room 712E
    200 Independence Avenue SW.
    Washington, DC 20201
    (202) 690-7650 (Voice)
    (202) 401-4005 (FAX)
    cfsac@hhs.gov (Email)


    Memo from Secretary Sebelius to Christopher Snell, CFSAC Chair, on the October 2010 Meeting http://www.hhs.gov/advcomcfs/sebelius_memo.pdf
    Registration open for NIH SoK Workshop on ME/CFS Research, April 7-8, 2011 https://www.infinityconferences.com/InfiniBase/Templates/157557/Index.htm
    MLV Gene Sequence Study - Questions and Answers http://www.fda.gov/BiologicsBloodVaccines/SafetyAvailability/ucm223232.htm
    CFS and Blood Donation http://www.hhs.gov/advcomcfs/assocbull1003.pdf
    CDC XMRV Overview http://www.cdc.gov/xmrv/index.html
    XMRV Q&As http://www.cdc.gov/xmrv/questions-answers.html
    Trans-NIH ME/CFS Research Working Group http://orwh.od.nih.gov/cfs.html WG at ME-CFS_Res_Wrkg_Grp@mail.nih.gov.
    -------------------------------------------------------------------------
    [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]
    http://edocket.access.gpo.gov/2011/2011-6702.htm

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

    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
  16. muffin

    muffin Senior Member

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    USA!
    Klmrav - Repost by Muffin

    CFSAC Dates Have Been Announced!

    The Chronic Fatigue Syndrome Advisory Committee will meet on May 10th and 11.

    We previously announced the Speak Up About ME Young People’s effort initiated by Denise Lopez-Majano and other advocates, here is the link.

    http://www.speakupaboutme.org/speak-up

    If you know of any young ME/CFS patients, please let them know about this important event.

    In keeping with the Speak Up About ME theme, we are also offering two tee shirts options and buttons for the adult CFSAC attendees and other May 12th Awareness Day supporters. The two-sided shirt costs more, but speaks of the retrovirus on the back.

    One sided Tee shirt:
    http://www.zazzle.com/cfsac_one_side...03612034563670

    Two sided Tee shirt with retrovirus message on the back:
    http://www.zazzle.com/cfsac_two_side...72448071068907

    $150 Million for ME/CFS Research Now button:
    http://www.zazzle.com/mcwpa_funding_...48348114878163

    Please note that there are many tee shirt options available (mens, womans, fitted, loose, short sleeve, long sleeve, etc.). I do not recommend the Value Tee for quality reasons. I am ordering a long sleeve tee so that it can be draped over the back of my chair in view of the camera…hehe.

    If you order your tee by 3/31, Zazzle has a discount code for $5 off: STPATSDEAL11

    Or for 10% your entire order, use discount code (good through 6/30): 10ZAZZLE2011

    Let’s fill the room!!! Invisible No More! Silent No More!

    Here is the link to the CFSAC Meeting Announcement:
    http://frwebgate1.access.gpo.gov/cgi...ction=retrieve

    Don’t wait to request a time slot for your testimony (in person or on the phone). If you are an adult, please ask for the 10th, we are trying to leave open the 11th for the young patients.

    Can’t make it to DC? Details for May 12 Awareness Day actions, that can be done on the local level or from your bedroom for that matter, are provided in the announcement above.
  17. muffin

    muffin Senior Member

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    MCWPA Moving Forward: Actions Completed, $ Raised, $ Needed, and Progress Report

    http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance


    --->> MCWPA Moving Forward, Actions Completed, Money Raised, Money Needed, and Progress Report. PLEASE Read so everyone knows what MCWPA has done and is going to do. So much done in so little time and yet more to do especially in the next couple of VERY critical months. Read and get involved in any way possible!

    2,173 Members as of 25 March 2011 - MCWPA began in August 2010.

    Moving Forward
    Posted by Tina Marie Miller Tidmore at 12:12pm 24 March 2011

    The MCWPA team is moving forward with the actions you said you wanted to accomplish in the first half of 2011. Next action:In the January survey, sending letters to other patient organizations that are now linked to XMRV was high in the survey response. So we are ready to start on that. The first and obvious one is prostate cancer. We would like to ask for any patient who would like to help in writing this letter, please contact us at volunteers@mcwpa.org.

    Action Completed:
    Doctors Need to Know (report- we were informed of people all over the world who mailed letters to their doctor. Over 1,000 viewed the instructions on the MCWPA Patient Discussion board.)

    Money raised for actions: We have the money for the press release to be distributed internationally through a wire service of the next big biological finding. It has been "pre-written," waiting for the published study. We have the money for the Public Service Announcement to be distributed to cable networks in May.

    Money needed:
    We need $1,450 more for the print ads on May 12. (Goal for this project was $3,000- total of 20 ads with the MCWPA contribution on each being $150.) To make a donation, go here: http://www.causes.com/causes/511536-me-cfs-worldwide-patient-alliance

    Progress report:
    We have at least four planned submissions for the Public Service Announcement contest. We hope to have examples posted for patient feedback next week. Please read all bulletins so you don't miss the opportunity.

    MCWPA Team
  18. muffin

    muffin Senior Member

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    USA!
  19. muffin

    muffin Senior Member

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    Calling for MCWPA Volunteers!

    http://www.causes.com/causes/511536?m=f042604e

    Posted on 27 March 2011

    Calling for ME/CFS Worldwide Patient Alliance (MCWPA) Volunteers!

    Hello MCWPA Members:

    The Fundraising/Publicity Team is looking for volunteers to assist in populating a contacts database. I promise it won
  20. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
    I think your posting was cut off, or you had some emergency and just left this hanging? Hope all is ok!

    GG

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