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.
Discuss the article on the Forums.

Phoenix Rising YouTube Video Thread

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

  1. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    I am so sorry you have the flu & I really hope you get over it soon.....CFS is bad enough w/o extra "fun" illnesses
     
  2. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    We're getting quite a few pictures now, thanks to those people who have sent them in. And since the song is only 4 min 41 sec. long we're planning on putting some info about CFS either before or after the song or both and your pictures may be used there as well.
     
  3. Robin

    Robin Guest

    Do you want me to change the thread title teejkay?
     
  4. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Well, we can definitely take off the "New". Do you have a title suggestion?
     
  5. femmgrrl

    femmgrrl

    Messages:
    19
    Likes:
    0
    I can do this teejkay! I am not on here much yet. I am sorry I did not get your PM. If you are willing to make it easy for me, that would help. I am not doing very well the past few weeks. Trouble eating, trouble sleeping. Last night was better but I feel so trashed. My house is a complete disaster. I have to clean something. I PM'd you back.
     
  6. femmgrrl

    femmgrrl

    Messages:
    19
    Likes:
    0
    Photos for Video and Song

    Hi. I took and sent you photos today for "weighing me down" with arms open and "coffee cup." I hope you like them!!! Please let me know because I am excited.

    -femmgrrl
    :D
    :victory:
     
  7. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Thanks so much femmgrrl! We got 'em and I wrote you back about them. :)
     
  8. RestingInHim

    RestingInHim Realist

    Messages:
    159
    Likes:
    43
    Riverside, CA, USA
    amen Tammie!

    Tee, I'll send you another photo in about a week. Sorry to hear you are hit with the flu...will pray for you.

    Thanks to all working on this...and to Cinder for putting to music words that express how what we experience. Is it true you don't have cfs? If so...you sure have a heart for those who do and an icredible insight!

    Resting with anticipation
     
  9. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Great Resting. We look forward to getting a picture from you. If you think you want to do the one where you drag yourself out of bed let me know now so I can take down the lyric line for it and put (pic possibly taken) next to the lyrics for it. If not, that's fine too.

    We'd like at least the upper body showing, not just a headshot.

    Thank you for praying for me. I'm feeling better right now. It seems to come and go in a strange way. How did you know I had the flu?

    ETA: Oh I said it earlier in the thread.. that was a different flu I think. I catch 'em back to back or several at once.

    tee
     
  10. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    * We still need a shot of someone dragging themselves out of bed.

    Also, if you have ideas for before or after the song on the video let me know. You can PM them or post them here. We have lots of headshots of people and many people are smiling and we plan on using every picture we've got in some way, so keep that in mind.

    The song is 4 min 41 sec. so there's about 5 min. of x-tra time for other info about CFS etc...
    However, we won't be using this video to attack anyone, including Wessely.
     
  11. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    44
    Santa Rosa, CA
    What about noting under the head shots the length of time that person has had ME/CFS.

    "Has had ME/CFS for 20 years." "Has had ME/CFS for 6 years." etc.
     
  12. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    That's a neat idea Gracenote but people are experessing that they want to be as anonymous as possible. However we'll gladly post that if anyone requests it. It would certainly drive the point home that we're trying to make.

    As we make the video and figure out where the pics will go I may PM some people who aren't going to be in the song part and see if they want to have that posted with their picture.
     
  13. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    44
    Santa Rosa, CA
    teej,

    I'm not encouraging names or screen names be added, just years of illness. That was my thought. I don't even know if I agree with my thought.
     
  14. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    I'm having my daughter take a picture tomorrow for the line "The doctors, mystified, could not produce an answer." Okay?
     
  15. creekfeet

    creekfeet Sockfeet

    Messages:
    553
    Likes:
    2
    Eastern High Sierra
    One thing to consider: put only as much text on each shot as a person can comfortably read and absorb in the time of that shot.

    You'll be cutting to the music, right? Each picture might be onscreen only five to ten seconds, maybe? In that time you want the viewer to be able to read the lyric and look at the face, while also listening.

    That in mind, I'm not sure if the years of illness and screen names might be more a distraction and clutter than otherwise, and I'm not sure how either would add to the impact.

    Maybe years of illness is a good thing to keep for another video. One whose sole point is to demonstrate the loss to society caused by this disease, where it would have the total years of illness all added up at the end... just a stray idea flitting through my head.
     
  16. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    For further text, one thought is that you could use the words that we came up with for the brochure........I would definitely put links to the canadian definition, and to Pheonix Rising, if Cort agrees (since it is a PR video)

    oh, and teej, sorry I haven't responded to your email re the pics I sent yet.....way behind on emails
     
  17. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Creekfeet, you are correct about the time per frame for us and I agree with overload of info. What GN is saying is for before or after the song, we could say how long people have been ill under their headshots which I think is a good idea if people here are okay with that.

    I'll probably be Pming them to ask unless we have no room for that. Like you say, we don't want to overload folks and we may find we have something else that we'd rather have there.

    Those are good ideas too Tammie. I really appreciate all the suggestions and discussion everyone.

    tee
     
  18. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    * We need one more shot of someone looking out the window.
     
  19. JustJack

    JustJack put on yer dancin' shoes

    Messages:
    53
    Likes:
    2
    Sacramento CA
    :cool:
     
  20. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Hi Jackie,

    It would be great if you could submit a picture of you dragging yourself out of bed. I'm sorry to hear you have to use 2 canes. Do you also have Fibro?

    Btw, when you use the Quote Box, just Copy what the other person wrote and then Click on the quote button above the text box and then write underneath it with your own message. Or hit "Reply With Quote" at the bottom of their post if you want to quote their entire post and then write your message under that.

    Because your message was in the middle of the quote box by me, I missed it the first 4 times I looked at it. lol
    I thought you had quoted me and just made a face. I kept thinking that was out of character for you. :Retro redface:

    Also, hit the "Go Advanced" button after you Click on Reply to get a larger text box. I thought I'd include that just in case you didn't know.
     

See more popular forum discussions.

Share This Page