1. Patients launch a $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!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

My New CFS Video--CFS Patients Address the CDC

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Jul 24, 2010.

  1. shannah

    shannah Senior Member

    Messages:
    833
    Likes:
    156
    Good suggestion Dreambirdie - I think I figured it out.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,205
    Likes:
    4,821
    Albuquerque
    Dreambirdie--Wow! You did it--and so very, very well. It mirrors the thoughts and feeling of so many of us. Thanks so much for your artistry in affirming our lives.

    Go Birdie!

    Sushi
  3. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Thanks Sushi. :hug: back to you!
  4. Cloud

    Cloud Guest

    Hmmm, I was loading 10 minute video's to my FB homepage just a few months ago before I closed the account. But, FB is known for booting people who break the rules (and some who don't)....so, I wouldn't try it. Bummer because not many video's under 2 minutes.
  5. Stone

    Stone Senior Member

    Messages:
    371
    Likes:
    6
    NC
    This is fantastic! Great job!
  6. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    6
    Hi Dreambirdie!

    Your video is fantastic. I'm so glad I came across it. The images, the words, the music, and the presentation are all just right. Very professionally done in my non-professional opinion!

    I'm in the middle of reading Osler's Web (finally), and I know of nobody to whom I can pass it on or even talk with about it! Reading it is really consuming my thoughts, and I can't even share them.

    Anyhow, your video is something I can share. It's a message many people need to see. So I thank you for a job well done and wish you some much deserved R&R time.

    As for the "other forum," I thought I knew what that was, but I guess there's a new "other forum." I never will understand the fighting that goes on between people with this disease. We are all alone in this together, and we need to save our energy for fighting those who seek to harm us instead of fellow sufferers. But I don't know what happened or why anyone left.

    Bless you, Dreambirdie for your efforts. They have resulted in a beautiful piece of work. You have done something very, very good.
  7. Nielk

    Nielk

    Messages:
    5,080
    Likes:
    4,638
    Queens, NY
    Dreambirdie,

    I want to thank you from the bottom of my heart.

    It is such a successful, beautiful, artistic work!

    This video should definitely be seen by as many people as possible!

    I really appreciate all the hard work you put into it.

    It's a video that benefits all of us who are ill.

    I hope you bounce back quick from your crash.

    Nielk
  8. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Thank you Finch.

    It's a very pleasant surprise to see you here. I have missed you. Hearing from you brings up some nostalgia for me, for the "good old days" we had here, way back when the forum was smaller and more intimate. I don't post as often as I used to, because my brain is happier when I spend less time on the computer, but there are times that I still want to check in and find out what's happening. Today, I got to hear from you, so I'm glad I took a peek.

    Like you, I also don't have energy to argue, and if I do have energy, that's not what I want do with it.

    Thanks again for your kind words. BIG :hug: to you!
  9. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California

    What a sweet message. Thank you Nielk. Very much appreciated. When I made the video, it was my intention to channel the thoughts and feelings of all of us who suffer with this disease. PLease do whatever you can to get this video out to as many as possible. Hopefully, it will help us to be heard and taken more seriously.

    As for my crash, I am still a bit wiped out, but recovering more and more each day. Thanks for your concern.
  10. silicon

    silicon Senior Member

    Messages:
    148
    Likes:
    72
    Thanks Dreambirdie for an excellent video! I shared it with a couple of CFIDS-related lists and also posted it on my facebook page.
  11. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Thanks Silicon, it's great that you did this.
  12. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    On the other thread about this video, Muffin asked HOW WE CAN GET THIS VIDEO OUT TO THE PUBLIC. Here's what I posted there about that:

    One idea I have, which I will be doing here in Santa Cruz, is submitting it to the local community television station. One of the producers at that station, who is my expert video consultant, and actually helped me to iron out the technical problems I had at the end of making this video, is the one who suggested the idea to me. It's a simple process, that requires filling out a short form and giving them a copy of the video on DVD.

    If anyone else here has a LOCAL COMMUNITY TV STATION they can submit this video to, please let me know.

    I am going to eventually burn a bunch of hard copies on DVD, so I can send one to anyone who can do this type of submission. (I will need to be reimbursed of course for the price of the disk and the shipping, but that shouldn't be more than a few dollars.)

    Community tv is usually very local and tends to have a small audience, but I think it's a good place to start.

    If anyone has other ideas, please do share those as well.
  13. femmgrrl

    femmgrrl

    Messages:
    19
    Likes:
    0
    Congratulations

    I think the video is very powerful and well done. Thank you for taking the time and energy out of an already hard life (living with CFS) to make it and publicize this issue that has stayed in the shadows for too long. I am tired of the pressure to explain myself to everyone, including doctors. This is not in my head and I am not making it up. I want a normal life like everyone else and am angry that due to an as yet unknown cause (possibly mercury poisoning) normalcy and the expectation of an average amount of daily energy has been stolen from me.

    My health situation is better than some and yet still really PISSES ME OFF. Because of your video and others like yours my friends and family now are beginning to understand the harshness and hardship I live with just trying to manage my CFS symptoms and function minimally in the world. I love beauty and nature like many of us and I believe there is still honor and beauty in the world worth fighting for and worth living for but when i have a severe health set back, it is easy to lose all hope.

    Thank you for taking time and your precious energy to confront the CDC on this issue and speak for many of us, for me, when I do not have the ability to do it for myself. As I improve I hope to pick up the banner and continue the activism started here.

    Thank you to all who fight the good fight for environmental sanity and protections so that there might BE a SEVENTH GENERATION... so that we don't use chemicals and poison everything before it is too late.

    My Rant is Over,
    Femmgrrl
  14. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,847
    Sofa, UK
    Fabulous video Dreambirdie. Thank you.

    Nice to see some familiar birds, flowers, and fungi on this thread too, hi everyone!

    I've now added the latest videos from the last few weeks to the "Video Library" thread:
    http://www.forums.aboutmecfs.org/showthread.php?6115-Phoenix-Rising-Video-Library

    I think I've included nearly all the videos discussed in threads on this forum, but the library's by no means comprehensive of course - the doctors section in particular could do with some more links - so please feel free to add suggested links, comments etc - and any videos as they're released in the future - to that thread, and I'll continue to update the 'index'. It's a work in progress, of course, all suggestions most welcome.

    Huge thanks again to everyone involved in all these videos, I think they're all brilliant!
  15. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Wow! Mark! I had no idea there were so many CFS videos made by people on this forum. That's great!

    We really need to get them out there where they can be seen by the world beyond us. I hope people take measures to do this.
  16. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    6
    Hello to you, too, Mark!

    Dreambirdie has done something really great here. Now it's up to us to figure out how to get her work viewed by as many as possible. Thank you, too, for putthing all those videos in one place. They are a great way to get our message across. People like videos!
  17. Wayne

    Wayne Senior Member

    Messages:
    2,178
    Likes:
    1,242
    Ashland, Oregon
    CFS Patients Address the CDC

    I'm in the process of sending a link of this video to some friends, and realized there was no title or youtube address in the initial post. It may have been posted later on, but thought I'd post it here in case anybody else needed help accessing it. -- Thanks again Dreambirdie!

    CFS Patients Address the CDC

    http://www.youtube.com/watch?v=y7VdXX9P58w

    Either one of these should work.

    ETA I just noticed that the title of the video is in the title of Dreambirdie's initial post. Anybody else occasionally have problems seeing things right in front of their face? :rolleyes: I do, all the time!
  18. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,918
    Likes:
    2,973
    N. California
    Hi Wayne--

    Thanks for bringing this to my attention. I will edit my initial post and get those links on it.

    Between the 2 of us, we share a brilliant brain! :Retro tongue::Retro tongue::Retro tongue::Retro smile:

See more popular forum discussions.

Share This Page