DISCUSSION: Article: Phoenix Rising YouTube Video Thread

Phoenix Rising Team · 2010-04-25

You can view the page at http://www.forums.aboutmecfs.org/content.php?111-Phoenix-Rising-YouTube-Video-Thread

M
mezombie

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

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!

jimbob

thanks to everyone for letting me be a small part of this amazing video.

Cort

I was a weepy mess after seeing it.

starryeyes

I'm glad you like my new name Maarten.

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

Starry aka teej

J

J
jewel

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

C

Cath

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....

spindrift

Wow!!!

Thanks to all that made this happen.

Dreambirdie

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!

Adam

Cath said:

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

gracenote

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

Cort

I posted it on my 'Bringing the Heat' Blog

I just got this comment from Pat in Miami

C

C
cinderkeys

*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.

willow

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

beesknees

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

justinreilly

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

starryeyes

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