Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Demonstration tomorrow at 11:00

Discussion in 'Upcoming ME/CFS Events' started by WillBeatCFS, Jan 26, 2014.

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Will you be able to join us?

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  1. WillBeatCFS

    WillBeatCFS

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    DEMONSTRATE!
    (please share widely)
    There will be an ad hoc demonstration tomorrow (Jan 27, 2014) against the IOM contract and the HHS’s refusal to accept the CCC.

    We will start protesting at 11:00 AM at the Judicial Square Metro Station (600 Fifth Street, NW Washington, DC 20001). I will be there at 10:45 AM to greet and organize people as they arrive.

    At 11:15 we will march (with slogans! with chanting!) one block to IOM's building (500 Keck Street). We will continue to protest until shortly after 12:15 PM (12:30 at the absolute latest).

    Jen Brea will be filming for "Canary in a Coal Mine." Her crew will be available before the protest to answer any pressing questions about appearing on film (please respect the crew’s time and remember that their main job is to film the day).

    All protesters should agree that an IOM contractual definition will seriously harm patients. We agree that we should follow our experts in calling for the approval of the CCC as the disease definition. As a group, we fear the IOM will “consider” (read: include) information like the NICE guidelines, will probably prescribe exercise as a cure and they almost definitely will call this as a psychiatric illness, not a physical one. PLEASE KEEP TO THIS CENTRAL MESSAGE; IF YOU FEEL YOU CANNOT, PLEASE DO NOT DISRUPT THOSE WHO ARE UNITED IN THE FIGHT TO GET A REAL DEFINITION.

    Those with seats inside need to go through security at the Keck Center no later than 12:30 PM for the meeting -- we will need to stagger ourselves so that they are not overwhelmed. There is a room to rest in for our use.

    We may have people from a variety of ME/CFS groups, with somewhat varied viewpoints. We need to focus on our specific core message. We absolutely do not want to confuse onlookers and any press who may be present.

    Please stick to the central message we agree on: "Adopt CCC, Stop IOM before it causes harm."

    I am in the process of finalizing banners, but currently our messages will be these: "Adopt the CCC. Stop the IOM Contract" "Do No Harm" "Experts for an Expert Definition."

    I’d love to know how many are coming. If you can, post “I’m coming!” as a comment so I have some idea. Thanks."


    Anne Keith

    If you have essential feedback or questions, please IM me on FB. I will only check this page tomorrow before I leave for the protest. It is going to be a busy and long night for me, with little time to spare.
     
  2. taniaaust1

    taniaaust1

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    Sth Australia
    I wish I could be there. Im there in spirit. Thanks to those who are doing and have organised this.
     
    ggingues and Nielk like this.
  3. taniaaust1

    taniaaust1

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    Sth Australia
    "Adopt CCC"

    That would make a great slogen on T-shirts being worn there esp if enough did it. (some may find holding up a sign hard).
     
  4. Ember

    Ember Senior Member

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    Canary in a Coal Mine
    5 hours ago
     
    NK17 likes this.
  5. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    Please find a warm place and take care of yourselves!
     
  6. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Many patients around the world support what you are doing. I do. I wish you a successful day.
     
    ukxmrv likes this.
  7. Ren

    Ren .

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    Thank you, all and best wishes.
     

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