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Phoenix Rising YouTube Video Thread

Discussion in 'Action Alerts and Advocacy' started by starryeyes, Jan 22, 2010.

  1. Samuel

    Samuel Bedbound with NO DOCTOR

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    Will there be people who are in wheelchairs, bedbound, with cannulas, and with IVs? I hope that severe sufferers are not left out.

    Will there be gravestones?
     
  2. Lily

    Lily *Believe*

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    Good thoughts Samuel.
     
  3. cinderkeys

    cinderkeys

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    It's great the way this has taken off!

    Something to consider, especially given how difficult it is for people to send in photos: the video does not have to mimic every line in the song. "Two-ton weights that hold me down" is a metaphor for the way the disease feels ... it's not a metaphor for two-ton weights. :) Pairing those lyrics with something more subtle, like a photo of someone sitting on a bed, head hanging down, might actually be more effective -- and way easier to photograph!

    This is already so hard for a lot of you. There's no need to make it harder on yourselves by playing charades with the lyrics.

    That said, I second Samuel's idea of wheelchairs, gravestones, etc. It would also be good to follow up a picture of an obviously sick person with a pic of the same person before ME hit, smiling and doing some physical activity. Laurel used this technique to great effect in her CFSAC video, and I'm guessing she wouldn't mind this video borrowing the idea. :)
     
  4. Cort

    Cort Phoenix Rising Founder

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    Is it possible to see this anywhere. What a great idea Teejkay!
     
  5. starryeyes

    starryeyes Senior Member

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    That would be a great photo to have. Can someone send one in like that? It's a great idea to have people in wheelchairs too, hopefully someone will send in a photo like that. If someone sends in photos of themselves or others with CFS in bed with IVs we'll put it in the video. The more I think about gravestones the more I like it. Thank you Samuel and Cinder for bringing up the idea of showing how severe CFS can get.
     
  6. LaurelB

    LaurelB Senior Member

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    Hi, all,


    Teejkay contacted me privately and asked that I post my video testimony from last October (mentioned above by Cinderkeys) as an example. Here is the link for anyone interested:


    http://www.youtube.com/watch?v=LvweCk44WHs


    Also, Cinderkeys mentioned the possibility of using a picture of someone in bed, head hanging down. Someone made a video last year using a poem I wrote about being bedridden with CFS. She uses a photo similar to that. Here is that video:

    http://www.youtube.com/watch?v=yugG8xyt6M0

    I can ask her where she got the picture if anyone is interested, or I'm sure it'd be easy for someone to take a similar one.

    I'm not able to keep up with posts these days, so if I don't' reply to any q's... it's best to contact me directly.

    Can't wait to see the finished product!
     
  7. LaurelB

    LaurelB Senior Member

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    One more thought .....


    not sure if this was mentioned... but it might be nice to have a picture of lynn gilderdale included, if we got permission to do so... not sure how we'd go about doing that, but she does have a tribute page:

    http://www.lynngilderdale.net/tribute.html


    it has an email link at the bottom to contact her family, if anyone wanted to do so to ask their permission.
     
  8. starryeyes

    starryeyes Senior Member

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    That would be great Laurel. Send us whatever you all can get that you think would work well in the video. Remember, we will be talking about CFS before and after the song on the video.

    Thanks for sharing your videos here Laurel. :) They're really good.
     
  9. Samuel

    Samuel Bedbound with NO DOCTOR

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    Laurel,

    Your CFSAC testimony was superb.

    Samuel
     
  10. LaurelB

    LaurelB Senior Member

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    Thanks, Samuel. :)
     
  11. starryeyes

    starryeyes Senior Member

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    Update: We're currently working on taxes and this year we have a lot of x-tra work to do on them. We'll be getting to the video as soon as we can.
     
  12. creekfeet

    creekfeet Sockfeet

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    Ohno! That was what I was supposed to work on today, taxes! Thanks for the reminder, and I hope you'll be able to move on from the taxes and to more fun things soon. I'm so looking forward to seeing this video, and I do hope editing it will be a fun thing.
     
  13. starryeyes

    starryeyes Senior Member

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    3/14/10 UPDATE: We're currently working on the YouTube video! If you emailed me a picture for it then you will be getting an email with the addy for the YouTube Video when it's finished and I will also be posting it here at the top of this thread and as a Post in this thread as well. We're not sure how long it's going to take. Thank you for your patience.
     
  14. starryeyes

    starryeyes Senior Member

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    4/7/10 Update: Oh yes indeed we are on CFS time here. The video is 3/4 done. The programs we've been using have kept crashing and then other things keep coming up too. I've been well enough to Post and Chat here but not well enough most of the time to work on the video like I'd like to, however, we have spent most of our weekends on it.

    I've really needed my husband's help because of my cognitive dysfunction. He's done a lot on the video but he also has to help and supervise me when I work on it or I get confused or miss important steps. But we are having a great time making it and we really hope you all like it. If I were well it would be 10 times better but it's still very rewarding to me to even be able to work on a project like this.

    Thank you all very much for your continued patience and understanding. :sofa:
     
  15. Dreambirdie

    Dreambirdie work in progress

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  16. starryeyes

    starryeyes Senior Member

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    The Phoenix Rising ME/CFS YouTube video is up.

    [video=youtube;00BZCjVK_6I]http://www.youtube.com/watch?v=00BZCjVK_6I[/video]

    You can access it at:

    http://www.youtube.com/watch?v=00BZCjVK_6I

    Thank you very much to everyone who sent in your wonderful pictures and a big thank you to Cinderkeys for letting us use your awesome song, Everybody Knows About Me.
    Thank you Dreambirdie for your tips and support.

    teej
     
  17. shrewsbury

    shrewsbury member

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    WOWZA

    I am so impressed! Thank you tee for making this happen. Thank you all involved.

    merci beaucoup

    :hug::hug::hug::hug::hug::hug::hug:
     
  18. Lily

    Lily *Believe*

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    Wow Teej! I didn't want it to end. Thank you to you, your hubby, Dreambirdie, Cinderkeys (great music) and to everyone who sent photos. I'm just really stunned, it was great. I have to say that we still look too healthy. A short look can be so deceiving, cant' it.

    Again many thanks for all your hard work.

    Hugs
    Lily
     
  19. dannybex

    dannybex Senior Member

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    Thanks Tee-J...

    Very well done. Many thanks to you, your husband, and all who worked on this -- I'm sure it must've taken a long time and a lot of your 'energy'. And yes, that song by Cinderkeys was perfection.

    Dan

    p.s. I agree with Lily. I'm shocked looking at my pic...I look way too healthy and too 'happy', but it was 5 years ago (seems like 15!), and guess I was just putting on that 'happy' face for the camera. Plus was glad I sold a painting.....
     
  20. shrewsbury

    shrewsbury member

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    fyi

    Forgot to say that it seems that you have to sign up for youtube to click that you like the video and/or to leave a comment (it guides you there if you're not signed up already).
     

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