1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
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Article: Phoenix Rising YouTube Video Thread

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 25, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. mezombie

    mezombie Senior Member

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    You did a fabulous job putting this video together, Starry Eyes/ Teej! Thanks for your hard work!

    :thumbsup:

    PS And thanks as well to all those who helped make this video happen, be it with ideas, images, or the song (love it, Cinderkeys!).

    What a marvelous piece of work-- produced by none other than members of our virtual village here!
     
  3. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    thanks to everyone for letting me be a small part of this amazing video.
     
  4. Cort

    Cort Phoenix Rising Founder

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    I was a weepy mess after seeing it. :)
     
  5. starryeyes

    starryeyes Senior Member

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    :D I'm glad you like my new name Maarten.

    We're so glad you all like the video. :Retro smile:

    Starry aka teej
     
  6. jewel

    jewel Senior Member

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    Amazing, evocative, true. What more can I say? Thank you,
    J.
     
  7. Cath

    Cath Guest

    I cried and cried through the clip. Sitting at the window watching the world go by....I don't look ill, but I am.....looks can be deceiving.....everybody knows about me.....NOBODY knows about me!!!

    This is the first time I've posted and I can't stop crying....
     
  8. spindrift

    spindrift Plays With Voodoo Dollies

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    Wow!!!

    Thanks to all that made this happen.
     
  9. Dreambirdie

    Dreambirdie work in progress

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    I keep watching it over and over, and get teary each time.

    I'm so glad you made it happen, teej. It's a keeper!
     
  10. Adam

    Adam *****

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    :hug::hug::hug:


    Hope you are okay with virtual hugs from a complete stranger.
     
  11. gracenote

    gracenote All shall be well . . .

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    I just received this note from a relative who saw the video.

     
  12. Cort

    Cort Phoenix Rising Founder

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    I posted it on my 'Bringing the Heat' Blog

    I just got this comment from Pat in Miami

     
  13. cinderkeys

    cinderkeys

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    *jumps up and down*

    I'm really happy to hear that Gracenote's relative donated because of the video. I hope she becomes one of many.
     
  14. willow

    willow Senior Member

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    Boo hoo... beautiful.. sniffle. Thank you all so much
     
  15. beesknees

    beesknees Senior Member

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    This video is a MUST see. What a wonderful song!
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    The best youtube video on ME by far! Thank you everyone involved!

    I didn't do any of the hard work to get this done, but I'd like to make a recommendation even though it's after the fact. Those who worked on it, please let me know what you think of my idea.

    Because we've been beat up so much, I think we sometimes fall into a trap of underplaying the facts and that hurts us a lot imo. I see Dr. Klimas doing this sometimes, like in the quote that was used in the video, something like 'CFS can be as disabling as late-stage AIDS.' This statement is not correct. Actually, ME/CFIDS has been shown to be, on average as disabling as end-stage AIDS.' There is a big difference in the impression these statements make. The misleading use of modifiers like 'can', 'some', 'many', etc. when they are not appropriate, in communicating about the disease is a big problem, imo. It's the main tactic our persecutors use, other than lying, to make ME seem less serious or the science more uncertain than it really is.

    Can we replace the quote in the video with something like this quote from Osler's Web, p.365, footnote?: The average ME/CFS patient "feels every day significantly the same as an AIDS patient feels two months before death." -Mark Loveless, M.D., AIDS and ME/CFS specialist
     
  17. starryeyes

    starryeyes Senior Member

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    Hi Justin,

    Glad you liked it. You make a really good point. If I had seen this quote I would have used it. Unfortunately it can't be changed now because we'd end up losing our current address and that would break everybody's link to it who has put it up on sites like this one, FB, Blogs, etc...

    I copied the quote and hopefully can find it again if I'm looking to use one like that again.

    Thanks so much for your comments and posting other comments on here everyone. They really mean a lot to us. :)

    starry aka teej
     
  18. Cort

    Cort Phoenix Rising Founder

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    Some more comments from the 'Bringing the Heat' Blog

    http://blog.aboutmecfs.org/?p=1465

    -Sarah

    Vannessa (sick 14 years)
     
  19. Rrrr

    Rrrr Senior Member

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    fabulous video. cried a lot watching it. thank you!!!

    rrrr
     
  20. Amusante

    Amusante

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    StarryEyes, thank you! What an enormous accomplishment. This is so moving. And the song is wonderful.
     

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