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A song about ME/CFS -- Proceeds go to research

Discussion in 'Action Alerts and Advocacy' started by LaurelB, Aug 18, 2009.

  1. LaurelB

    LaurelB Senior Member

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    This is a bit of an unusual topic, and I wasn't sure where to post it. :)

    I had a person contact me through my blog the other day. She is a songwriter/singer, and while she does not have ME/CFS herself, she has a friend who has a pretty severe case of it.

    In his honor, her band (Cinder Bridge -- indie/folk) wrote a song about it called Everyone Knows About Me. All the donations/proceeds (100%) for the song will go to ME/CFS research (RESCIND).

    Here's a site where you can listen to the song, download it for free, and make a donation if you feel so inclined:

    http://tinyurl.com/ekamrd

    Who knew there was a song out there about CFS? ;)

    Incidentally, the cover art was done by someone with ME/CFS.

    Again, I don't know this person and had never heard of the band before, but had contact with her the other day through my blog. I've checked out her blog as well (http://cinderbridge.blogspot.com) and though it's mostly about her band/music, there are some posts about ME/CFS, and she seems to be quite knowledgeable and aware about research, advocacy and such. She also follows other CFS blogs to better understand the illness. She's very nice. :)


    Anyway, here's a site I found which lists the lyrics and what Susan's goal was in terms of the message of the song.

    http://annenigma.blogspot.com/2008/06/song-of-cfs-and-invisible-illness.html

    The song does unfortunately mention the "yuppie flu," but please note she's trying to convey that people think they know all about it, that people minimize it/trivialize it, and think we should be able to easily climb out of it, that they think it's in our heads, we just don't want to get well, etc. I think she does a good job.

    Susan told me she is performing this song (along with a few others) live on a radio station in Tucson tomorrow night (August 19th) at 5pm PST (6pm MST, 7pmCST, and 8pm EST). They hope to talk about ME/CFS a bit during the interview, if time permits. If at all interested, you can listen to it live here:

    http://www.publicbroadcasting.net/kxci/ppr/index.shtml

    Just thought I'd pass it on, since all proceeds go to research. :) I'd be curious what people think!
     
  2. LaurelB

    LaurelB Senior Member

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    This is a bit of an unusual topic, and I wasn't sure where to post it. :)

    I had a person contact me through my blog the other day. She is a songwriter/singer, and while she does not have ME/CFS herself, she has a friend who has a pretty severe case of it.

    In his honor, her band (Cinder Bridge -- indie/folk) wrote a song about it called Everyone Knows About Me. All the donations/proceeds (100%) for the song will go to ME/CFS research (RESCIND).

    Here's a site where you can listen to the song, download it for free, and make a donation if you feel so inclined:

    http://tinyurl.com/ekamrd

    Who knew there was a song out there about CFS? ;)

    Incidentally, the cover art was done by someone with ME/CFS.

    Again, I don't know this person and had never heard of the band before, but had contact with her the other day through my blog. I've checked out her blog as well (http://cinderbridge.blogspot.com) and though it's mostly about her band/music, there are some posts about ME/CFS, and she seems to be quite knowledgeable and aware about research, advocacy and such. She also follows other CFS blogs to better understand the illness. She's very nice. :)


    Anyway, here's a site I found which lists the lyrics and what Susan's goal was in terms of the message of the song.

    http://annenigma.blogspot.com/2008/06/song-of-cfs-and-invisible-illness.html

    The song does unfortunately mention the "yuppie flu," but please note she's trying to convey that people think they know all about it, that people minimize it/trivialize it, and think we should be able to easily climb out of it, that they think it's in our heads, we just don't want to get well, etc. I think she does a good job.

    Susan told me she is performing this song (along with a few others) live on a radio station in Tucson tomorrow night (August 19th) at 5pm PST (6pm MST, 7pmCST, and 8pm EST). They hope to talk about ME/CFS a bit during the interview, if time permits. If at all interested, you can listen to it live here:

    http://www.publicbroadcasting.net/kxci/ppr/index.shtml

    Just thought I'd pass it on, since all proceeds go to research. :) I'd be curious what people think!
     
  3. Jody

    Jody Senior Member

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    Laurel,

    Sounds good. Intriguing. :)

    Will check out some of those links later.

    I'm glad you posted this. :)
     
  4. Jody

    Jody Senior Member

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    Laurel,

    Sounds good. Intriguing. :)

    Will check out some of those links later.

    I'm glad you posted this. :)
     
  5. caledonia

    caledonia

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    I like it.
     
  6. caledonia

    caledonia

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    Cincinnati, OH, USA
    I like it.
     
  7. LaurelB

    LaurelB Senior Member

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    I like it too. :)
     
  8. LaurelB

    LaurelB Senior Member

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    I like it too. :)
     
  9. _Kim_

    _Kim_ Guest

    I just found this older post and thought I'd bump it up so others can hear Everybody Knows About Me. The link that was originally posted is now broken.
     
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Thanks, Kim


    Hi Kim,

    Yes, I think the original post was broken, thanks for the updated link. Great song, I sent their link to a couple of friends who I think will appreciate it too.

    Take care,

    Maxine
     
  11. starryeyes

    starryeyes Senior Member

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    Wow! Everybody Knows About ME is powerful! That is so good. I Bookmarked it and I think it will become my theme song. :D I thought the way she incorporated the words "YUPPIE Flu" was perfect! I liked hearing it in the song. She sounded angry when she sang that.

    lol Oh that song rocks.

    I've been to your Blog quite a bit over the years Laurel, as searches I've made have taken me there. You do a great job writing and explaining what it's like to have ME and I've always liked that picture of you. You look like you're not going to let anything bring you down even though you are suffering.

    Thanks so much for sharing this. That was a great way to start off my Friday evening.

    tee
     
  12. LaurelB

    LaurelB Senior Member

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    Thanks Tee!

    I really like the song too. :)

    Sorry on the link no longer working above.... they must have removed the page as I can no longer find it. So thanks to Kim for reposting it with another link!

    Thanks, Tee, for the comment on my blog and photo too -- really appreciate that!

    Best wishes!!!

    Laurel
     
  13. starryeyes

    starryeyes Senior Member

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    Hi Laurel,

    We might want to use that song here to put together a video Starring all of us or whatever each person wants as a representation of themselves. This link still works:

    http://cinderbridge.blogspot.com/

    And here are the lyrics:

     
  14. LaurelB

    LaurelB Senior Member

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    Great idea

    That's a great idea, Tee!

    I had wanted to use the song for my video but it wasn't long enough (the song ended a couple minutes before my video did). :)

    I'm too sick now to make another video, but if someone else wanted to put it together, that'd be great. I am in contact with the songwriter, so would be able to ask her permission. Actually, as you noted, she has a blog so it's pretty easy to find her. I'm sure she'd be thrilled. :)
     
  15. cinderkeys

    cinderkeys

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    Lyrics

    Laurel: I'd had no idea you thought about using "Everybody Knows About Me" for your video. I'm very flattered. Also amused -- I'd worried that this song would be too *long*. :)

    Just in case the lyrics will be used in the video, I'm reposting them here. (Whoever posted them originally got almost all the words right -- probably more than I would have if I were transcribing them and hadn't written them myself.)

    Everybody Knows About Me
    Lyrics by Susan Wenger
    Music by Cinder Bridge

    Here I am again, sitting by the window
    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
    As I lift a cup of coffee to my face
    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
    They don't exist if no one else can see
    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
    When I woke up each day
    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
    So they told me it was all in my head

    'cause if I wanted to
    I could shake this yuppie flu
    Straighten out and set myself free
    Anyone can clearly see
    We all choose our own destiny
    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
    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.
     
  16. LaurelB

    LaurelB Senior Member

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    Hey, Susan! Nice to see you on here! :) Yes, thought of using your song but was just a bit too short. I also decided it might be best to use an instrumental; otherwise, people might not know whether to listen to the lyrics of the song or to the script of what I wrote in the video. But I think it'd be great if someone could put some kind of video together using your song!! There are a lot of creative people on here. :)

    Your friend is lucky to have someone in his/her life who is such a strong support and advocate!

    Best wishes!
     
  17. starryeyes

    starryeyes Senior Member

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    This is great. I'm happy to see you're active here LaurelB and Cinderkeys. We were going to ask Cold Taste of Tears to make a video but I see he hasn't come back to the forum yet if he will at all.

    I know how to make a video but I'm really bad off these days so would be happy to let someone else do it. I also wonder how we could do it. How do you get everyone to put their part in? The idea was to have people here on the forum either sing or mouth different lines or choose a photo or two of something representing them for their part.

    I also think that the lyrics are very important in this song and that they should be put in the bottom of the screen.
     
  18. Dreambirdie

    Dreambirdie work in progress

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    Hi Tee--

    I have worked with film and made an hour long documentary about 2 years ago on a local political issue. So I could MAYBE work on this, as long as I can go real slow and measure my energy output. I would DEFINITELY need some help with it though.

    I think the hardest part would be getting everyone's video pieces to be in the same workable format. I am VERY NON-TECHY, and would need all the clips to be easily transfered into my Final Cut Pro.

    Maybe... it would be easier to use still photos, and have everyone hold placards with the words... ? Or just one of the words, or any word of their choice...
    Not everyone has access to a video camera, but most have digital cameras at this point...

    Just throwing around some ideas. Let me know what you think.
     
  19. starryeyes

    starryeyes Senior Member

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    In case anyone else comes across this.. this thread continues in Advocacy under Phoenix Rising YouTube Video.
     

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