• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Article: Phoenix Rising YouTube Video Thread

Wouldn't it be nice to have pictures of people bounding on the grass instead? Jeez......Hopefully some day!

You mean like this? Yeah, wouldn't that be something.

3502-000213c.jpg
 
Doing something like that seems like a lost dream....being able to go for a nice long walk everyday without feeling hammered the next day would be a huge accomplishment
 
Absolutely wonderful!!! Thank you all who contributed the pictures, hats off to the composer/singer of the song and to Starry/TeeJ for pulling everything together in such a creative and professional manner. WOW!!!

June :victory::victory::victory:
 
I've started a new thread about a press release about this video in Action Alerts and Advocacy. I'm hoping to get the press release out to newspapers for ME Awareness Day on Wednesday, May 12.

For the release, I'm looking for quotes about how the video affected people with ME, or how it affected a healthy person you know. There's great material right here in this thread, but I can't use it without permission. I'd also need your real name and location. (You can e-mail that to me at susan@cinderbridge.com if you're interested.)

Sorry for the double post. I wasn't sure where the best place was to put this.
 
It brings tears to my eyes every time. I weep for myself, and I weep for all of us. It makes me feel closer to you all, to know how close our experience is. Every time I see it I have to check the pictures to make sure that the 2nd-floor flat depicted isn't actually my own 2nd-floor flat, and that the bars on the cage aren't my own bars. And so I know that I am no longer alone in my prison! It is extraordinarily powerful for us.

It makes me feel so proud as well. So full of admiration for starryeyes, Susan Wenger for the lyrics, and Cinder Bridge for the music. So grateful to you all. So proud of us.

This is by us and for us, first and foremost. We need it to reach everyone we know who is affected.

Thank you so much Teej and everyone. Love you all!

:hug::hug::hug:
 
Thanks to everybody who said nice things about the song. The images in the video, though, have added so much power.

Ron the Drummer has been sending links to the video to everyone he knows. One of them e-mailed the link to people HE knows with the following comment:

"I'm not asking anyone to make any donation or even to disseminate this video unless you want to do so. I'm forwarding it because I found it touching and educational. I'd heard of Chronic Fatigue Syndrome, but never having known anyone who had it I never thought about what a horrible disease it must be.

"I hope you can find a few minutes to listen to this."

You guys did good. :)
 
Thanks so much for your kind words, Mark. Now I have tears in my eyes too. Hugs and love to you too.
:hug:

Thanks for sharing that comment with us too Cinder. I'm so glad this video is helping people understand what we're dealing with. Hurray!

I'll have to check out your thread Jody.

(((((((((Group Hug)))))))))

starry
 
Finally, I was able to watch/hear the PR video tonight (after buying speakers for my computer today).

So I'm able to say with genuine admiration how moved I was, after watching & hearing the video. I was overwhelmed by the words, touching melody & photos. Brilliant job from all who contributed. Congratulations to all. You should feel really pride of yourselves for the efforts - the imagination & professionalism in the Video was stunning.
I hope it generates greater awareness out there in the community.
 
The guy I mentioned earlier, who e-mailed the video link to people he knew? Discovered that his cousin has had ME for 24 years. Yikes. He hasn't seen the cousin since before the disease struck -- they're only in e-mail contact -- so he might have never known otherwise.

In other news, a fellow songwriter blogger posted the video: http://www.janniefunster.com/2010/05/26/me-cfs-phoenix-rising-video/. Her blog gets decent traffic, too, so that's a little more exposure. :)