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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Phoenix Rising YouTube Video Thread

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

  1. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    The Phoenix Rising ME/CFS YouTube video is up.

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

    Feel free to put this video on Blogs, FB or wherever you want.


    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
     
  2. Molly29

    Molly29

    Messages:
    42
    Likes:
    0
    Lyrics are AWESOME!

    WOW Tee... Good Luck and Thank you!
     
  3. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    These are the lyrics:

    Everybody Knows About Me

    Lyrics by Susan Wenger
    Music by Cinder Bridge

    http://www.myspace.com/cinderbridge

    Here I am again, sitting by the window (Pic taken)
    In my small apartment on the second floor
    Keep myself occupied by looking at the traffic
    As if I've lost the right to ask for more
    My body feels like it's moving underwater (Pic taken)
    As I lift a cup of coffee to my face (Pic taken)
    I think about the things I'd like to try and do today
    But somewhere in the middle lose my place

    Thick fog hazy brown
    The two-ton weights that pull me down (Pic taken)
    They don't exist if no one else can see (Pic taken)
    Everybody knows about
    The failings of the down and out
    And everybody knows about me

    I had a good job, had some good friends
    Had a life I could look forward to (Pic taken)
    When I woke up each day (Pic taken)
    And then the fog rolled in
    Consumed them one by one
    'til there was nothing left for it to take away
    Sometimes I count it as a victory when I manage
    Just to drag my aching body out of bed
    The doctors, mystified, could not produce an answer (Pic probably taken)
    So they told me it was all in my head (Pic probably taken)

    'cause if I wanted to
    I could shake this yuppie flu
    Straighten out and set myself free (Pic taken)
    Anyone can clearly see (Pic taken)
    We all choose our own destiny (Pic taken)
    And everybody knows about me

    Does it make it easier for you
    To think there must be something I can do
    Rise like a phoenix from the ashes
    Of this solitary world

    So I remain here, sitting by the window
    (Pic taken)
    Watching all the people with their lives to live
    I would give anything to go outside and join them
    But today I don't have anything to give

    And still they have no doubt
    I'm looking for an easy out
    And this is what I wanted secretly
    Everyone will have their say
    They shake their heads
    They walk away
    And everybody knows about me
    Everybody knows about me
    Everybody knows about me

    ------------------------------------------------
    Copyright 2005 Susan Wenger. All rights reserved.
     
  4. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,110
    Likes:
    3,356
    N. California
    I just finished writing my CFS song. I'm REALLY HAPPY with it! :cool::Retro smile::Retro smile: It flowed out like magic, in just a few hours.

    I still have quite a ways to go as far as recording it, which I'm going to attempt to do over the next however long it takes. I don't want to stress out and exhaust myself in the process, so I'm going to take it S-L-O-W. It will get finished when it's finished...
    and I'm okay with that. :cool:

    Because it may be a while before my song is ready for public consumption, I asked Tee to go ahead and use Cinder's song for the PR video, and I can do another video later down the road with my song. There can't be too many videos on THIS issue! I'm glad Cinder FINALLY got back to us about permission. So now we know that it's all okey dokey with that!
     
  5. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Yay DB. I can't wait to hear your song and I'll be happy to do whatever I can to help you with your video too. You're absolutely right, we can't have too many videos out there about ME/CFS. :D
     
  6. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    We're starting to get quite a few pictures and some video. Keep 'em comin'. :Retro smile:
     
  7. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    I was just going through some of my saved videos and I came across this one that someone here had put up back when we were talking about making a group video. Originally we wanted everyone to sing a line to a song, like Cinder's.

    Here's the video:

    http://www.youtube.com/watch?v=uN90xB7DswE

    ETA:
    We didn't receive any video from people for this YouTube video but we might want to use this idea in the future for other videos we may make.
     
  8. cinderkeys

    cinderkeys

    Messages:
    37
    Likes:
    0
    Yay!

    I'm looking forward to hearing Dreambirdie's song. And like she (he?) said, there will be more than one video. If it turns out his (her) song works better for this one (and it's ready in time), I'm not going anywhere.

    Safe to assume that this video will not be used for the CAA, or to extol the benefits of CBT/GET? Knowing this crowd I'm guessing it won't, but it's always good to check. :)

    BTW, I think I misspoke before. My song was inspired by someone male, but it could be about a man OR a woman. I made it gender-nonspecific on purpose, as the person's gender isn't really relevant to the song.

    I'm glad e-mail alerts for this thread seem to be working now. Here's hoping they keep working. :)
     
  9. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Cool Cinder. Well, we're going to go ahead and make your video for sure now. :) We are all very against CBT and GET as therapy for our neuro-endocrine-immune-dysfunctional illness also known as ME/CFS so no worries there and no it will not be used for the CAA either.

    I'm glad the email alerts are working again. It's good to see you here. :Retro smile:
     
  10. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,110
    Likes:
    3,356
    N. California
    Me too, Cinder. :Retro smile::Retro smile::Retro wink:

    For now, my song is in process and won't be ready for some time.

    I am definitely a SHE, at least in THIS lifetime.
     
  11. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,110
    Likes:
    3,356
    N. California
    Hi Tee--

    I can send a photo, but don't want to be the ONLY one. Also, I have to wait until my partner returns home and can shoot it for me.

    Maybe you should start a thread that CLEARLY expresses A REQUEST FOR PHOTOS FROM FORUM MEMBERS. I'm not sure people really know what you're up to here. It might be helpful if you put the dots close together, so that it's really obvious.
     
  12. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Okay, I'll give that a try DB, thanks.
     
  13. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    9
    Woodridge, IL
    I can definitely send a photo (& would very much like to) - just have to get someone to take it first....how soon do you want these?

    love the lyrics, btw

    and am also looking forward to db's song when it is finished
     
  14. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Great Tammie. We're on CFS time here so there's no definite timetable. I'll alert everyone when we start working on it. Once we start we'll need the pictures.

    Remember, if anyone wants to send video of them singing a line let us know.

    And Molly, Welcome to the Forum! :balloons: I forgot to Welcome you before.
     
  15. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    So far there are only 3 of us willing to put pictures in the YouTube video. I think we're going to need more participation than that if we're going to call this a Phoenix Rising YouTube Video. It's looking like it will just be a CFS video which is okay too. I only want people to participate if they really want to... no guilt allowed! :Retro smile:
     
  16. Molly29

    Molly29

    Messages:
    42
    Likes:
    0
    And Molly, Welcome to the Forum! :balloons: I forgot to Welcome you before.

    Thank you Tee!
    :hug:
    I know you're proud of me now! Right!?
    Everyone get to snappin those cameras!
    LOL!
    Molly
     
  17. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    9
    Woodridge, IL
    One thing I wanted to mention about this.....I was talking to one of my online CFS friends - wanted to tell her about the song - she said that it would be really good if we could get a diverse grp of people's pictures on the video if at all possible (to show that this is not just a middle aged white female illness).....I realize that this is intended to be a Phoenix Rising video, so we may (or may not) be a more homogeneous grp than CFS patients as a whole, but I did think that was a good point

    the friend does not actually come to this site, and she has been one of the Faces of CFS and has also done a utube video re the cognitive issues associated with CFS, so she said that she thinks her pic is probably already out there enough....but she did say that if anyone wants to use it for this, they are welcome to
     
  18. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Yay Molly! :)

    Thanks Tammie. Well, if we don't get much participation from here we could ask others to be in it from other forums etc... ahm..but again, it won't be a Phoenix Rising Video then. So far all 3 people are women so that's what we've got. I don't know of too many guys with CFS. I was hoping Cort would be in it though, then it would definitely be a PR video.
     
  19. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    9
    Woodridge, IL
    Yeah, Cort should definitely be in it if it's supposed to represent PR......there are a few guys on this site & there are various ages represented here, don't know if there is any other diversity or not (ethnic/racial anyway - obviously diversity related to other things wouldn't show on a video anyway)

    I know that you already started another thread asking for pics, but maybe the title should mention what the pics are for.....don't know, but maybe that would get more responses

    I had my friend take some pics of me tonight, so now I just have to figure out which one I like best and get it on the computer
     
  20. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Excellent Tammie, that's great. Thanks for your thoughts too.
     

See more popular forum discussions.

Share This Page