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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Article: Standing Up For ME/CFS: Rivka Takes on Washington

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 19, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. CBS

    CBS Senior Member

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    Rivka,

    I watched your video yesterday and it brought me to tears. So many smart, creative and caring people ridiculed if not completely ignored.

    Thank You!
  3. muffin

    muffin Senior Member

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    USA!
    Have to give you big credit! You do have guts girl! Most people would not do what you did as they would be terrified of being arrested - this being post 9-11. But you did good girl! I think they figured you were not a threat so they left you alone and then were curious why you were there.

    Good going. Proud of you. They would have taken me off to the DC jail - not a place any one wants to go to!

    :victory:
  4. frenchtulip

    frenchtulip Senior Member

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    Rivka, congratulations on your courageous and powerful statements! I appreciate your efforts to help ME/CFS patients and to safeguard the blood supply!
  5. Forebearance

    Forebearance Senior Member

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    Wow Rivka!!! How amazing!
    I wish I could have been there with you and made it a two person protest!
    Love, Forebearance
  6. floydguy

    floydguy Senior Member

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    Rivka - Great work! That takes guts! Thanks for your hard work!
  7. Cloud

    Cloud Guest

    Very inspiring and motivating. Thanks Rivka (mom and sis too)....that took ovaries, and a passion for justice for our cause.
  8. Cort

    Cort Phoenix Rising Founder

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    It makes think a) how effective video's are at spreading the word and b) why we don't this all the time. Certainly why we don't do video's at the CFSAC meetings twice a year. Think how inspiring it would be if we had video's from all around the US and Europe and elsewhere of patients protesting the lack of research into ME/CFS.

    All it takes is one person with a camera and some people to show up at a designated spot and talk.....its takes a little organization....a little motivation........some passion..
  9. Cort

    Cort Phoenix Rising Founder

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    Anybody who has Facebook you can easily spread the word by clicking on ths Share/Save button on the top left of the page
  10. ukme

    ukme Senior Member

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    Thanks for doing this Rivka, like Cort says we should do more of it, it's very effective.
  11. helsbells

    helsbells Senior Member

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    I am so shy and non confrontational, I think this is amazing - that you did this by yourself and it wasn't half hearted just makes it more beautiful
  12. Merry

    Merry Senior Member

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    Thank you, Rivka. One person - ill, so alone - in front of a big government - really quite moving.
  13. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Great going Rivka. I hope your protest helps others understand how it takes just one, to start making us heard.

    Best luck on getting things changed there in America.
  14. Liz

    Liz

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    Well Done! Thank you, Rivka. Such a simple, brilliant idea. Very powerful. I did send the letter along to K. Sebelius. Great contact.
  15. tymewarp#9

    tymewarp#9

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    Rivka, You Rock! THANKYOU:victory:
  16. Gemini

    Gemini Senior Member

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    Rivka,

    Thank you for your excellent demonstration!
    Great locations, commentary and posters!

    Gemini
  17. Enid

    Enid Senior Member

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    And all our voices will come together - strength from we incapicted too long ignored. (Pathetic). But from all our stories we will move science.
  18. silicon

    silicon Senior Member

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    Rivka is heroic! I posted a link to the article on my fb page.
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Rivka - well done. That was such a courageous act and demonstration!

    It was good to hear that you had the support of your family too!

    It also just goes to show that security guards do have a heart, if you can just get through to them (I once made a US Customs/Passport official smile at JFK airport by mistake - it doesn't happen very often!)
  20. ANGELONDUTY

    ANGELONDUTY

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    good going...........i would be out there w/you,........in a heartbeat.........if i could.!
    Haven't left my home in over a yr.,,,to sick

    thank you soooo much, " for standing-up" for all of "us"
    in blessing's,
    marie

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