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My CFS/CFSAC Testimony for 10/2009 Meeting

Discussion in 'Action Alerts and Advocacy' started by LaurelB, Sep 27, 2009.

  1. LaurelB

    LaurelB Senior Member

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    Below is a video testimony I created and submitted for the upcoming October CFSAC meeting. I am unable to speak above a whisper, so my sister-in-law does the voice over for the video. There's a 5 minute time-line for testimonies, which is why some of it goes too fast. :)


    Here's the link:

    http://www.youtube.com/watch?v=LvweCk44WHs



    I haven't heard back if it will be played at the meeting or not, but PANDORA already has it featured on their youtube website (http://www.youtube.com/user/pandoranet) and it sounds like things are moving forward.

    I also made one without a voice over and set to music, primarily just for youtube and for emotional effect. :) It can be viewed here:

    http://www.youtube.com/watch?v=qQX0XLqdx1A

    I'm in a really (really) bad crash right now, so probably won't be able to respond to comments -- but they are always welcomed and appreciated! Permission to repost either video anywhere you'd like. Thanks for watching! :)

    Laurel
  2. Lisa

    Lisa Senior Member

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    Hi Laurel :)

    I am at a loss for words, so will keep it short. Very good video and I hope they will accept it for the meeting.

    Very sorry to hear you've been crashing badly. If virtual hugs have healing power then I hope this one is extra good because it is a Super Deluxe Extra Fuzzy Bunny Hug of Hope! :)

    One more just to be sure - HUG!

    Lisa :)
  3. kolowesi

    kolowesi Senior Member

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    LaurelB testimony

    Dear Laurel,

    Look what you did! You are not invisible. You are eloquent and wise.

    I believe that any policy maker who watches this will have to change their opinion of ME/CFS.

    You have made a difference, for all of us.

    Like Lisa said, Hugs! May all your dreams come true.

    Kelly
  4. Finch

    Finch Down With the Sickness

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    Hi Laurel,

    You've done a brilliant job! Your spirit shines through even though you can't speak for yourself. I hope this testimony can be heard and seen at the meeting in October.

    I don't know how anyone could see this and not be moved - not anyone with a soul, anyway! I was certainly moved to tears for you. Not tears of pity, but tears from seeing your obvious courage and desire to regain wellness.

    You've really expressed yourself so well in the allotted time period - amazingly. I thank you and everyone else who is able to provide testimony in the hope that the message can get through to the right people. YOU ARE SO BRAVE!

    Thank you, thank you, thank you Laurel!

    Wishing you wellness and blessings for a wonderful future together with your fiance,
    Finch
  5. Jody

    Jody Senior Member

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    Laurel.

    I watched your video, saw you. Heard your sister-in-law be your voice.

    A work of art, Laurel.

    A priceless work of art.

    Can I put a link to it on my website and my blog?

    I'd be honoured to make it accessible there.

    You've done yourself proud, girl. :)
  6. Snez

    Snez Senior Member

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    Laurel,
    Thank you, thank you for creating this video and sharing yourself in this way.
    I was moved very deeply by your testimony. I pray your contribution, and others like it, will make itself be heard throughout our society so that real and effective changes can be made.
    I'm sorry that you are going through a crash- may you get fully well and realise your dreams.

    Snez
  7. Koan

    Koan Be the change.

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    Thank you, thank you, thank you... for this moving and eloquent piece.

    It can take a team of people, a pile of money and a panel of communications experts to create something not half so effective.

    Again, thank you!

    Rest now!

    Koan
  8. MEG

    MEG Senior Member

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    Laurel:

    The video has left me speechless.

    I hope it is shown at the Oct. meeting and all over the world.

    What a gift you have given to all of us with CFS...
    Thank you.....
  9. LaurelB

    LaurelB Senior Member

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    Thanks to everyone for such kind words... can't tell you what it means to me!!! So very much appreciated.

    Jody, yes, you can put it up on your blog. I'd be honored to have it there. :)

    Thanks again to everyone for all the wonderful comments.
  10. Dreambirdie

    Dreambirdie work in progress

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    Thank you Laurel

    Amazing! I am so grateful that you did this. It inspires me to speak out more publicly myself.
  11. dannybex

    dannybex Senior Member

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    Absolute Perfection!

    Hi Laurel,

    You know I've enjoyed and read some of your posts, but those posts always are accompanied by your smiling avatar and overall upbeat demeanor. I had no idea you could not speak above a whisper and are so incapacitated. I know you will get better however because of your tenacity and determination that shine through in both your posts and your video.

    Your video is PERFECTION. I agree with Koan...a team of highly paid consultants, producers, etc., could not have done a better job.

    I will send it out to everyone I know. You have shown to us all that one person (and perhaps their friends/family) CAN make a difference.

    And I know you will get better.

    THANK YOU LAUREL,

    Dan
  12. LaurelB

    LaurelB Senior Member

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    Such kind words, Dan (and others) -- thank you so much. REALLY appreciate it!
  13. SDD1244

    SDD1244 Guest

    Thank you, Laurel. You may speak softly, but you certainly carry a big stick. BRAVO !!!
  14. LaurelB

    LaurelB Senior Member

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    Thanks SDD! :)

    Just got word this morning that my video testimony has been accepted! It should be viewed at the meeting on October 30th around 9:15 a.m. along with the other patient testimonies. So that was very exciting to hear! The work paid off. :)

    Now off to do some more resting! :)
  15. Lisa

    Lisa Senior Member

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    Excellent Laurel! Exciting news :D

    Well done! :)

    Lisa :)
  16. KC22

    KC22 Senior Member

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    Wonderful news!!!

    This is so well done and will represent the many people who are sick with this disease.

    Thank you so much for making this tape while you are so sick....
  17. Frickly

    Frickly Senior Member

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    Laurel

    Thanks for taking the time to make this video. It must have taken alot of time and effort. I especially like the part where you said we are not tired but sick. I think I would have been diagnosed sooner if it weren't for the name of this disease. It not only confuses physicians but it also confuses sufferers who are searching for a cause to their pain. Well done......
  18. jackie

    jackie Senior Member

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    Laurel

    Congratulations!...and thank you! I'll add my words of praise for such a perfect job of painting a "picture" of us!

    You were able to articulate what I'm no longer able to. And even more importantly, watching this allowed me to finally cry.

    I hold back my tears of grief and loss as the very EFFORT of crying generally makes me feel worse.

    But as you talked about the things you love to "do" (as if they were in the PRESENT...as if you were DOING those beloved things NOW) I exploded into tears. Tears of compassion, sympathy and understanding for you...but also for myself.

    Instead of self-pity or rancor, you showed courage, stoicism and a resilience of spirit, with a determination to hold onto your life (no matter how it is being played out) that "we" all must have to survive.

    This is our "hallmark" and I believe that anyone seeing you and hearing your words can't help but understand...at last!

    I experienced a measure of healing which I am grateful for.

    jackie
  19. Jody

    Jody Senior Member

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    Laurel,

    It comes as no surprise that they would accept your piece. They'd be crazy not to.

    Fabulous.

    Now if only they'd give out awards for the best one ... You'd win hands down. :D
  20. Navid

    Navid Senior Member

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    thank you laurel

    your story is my story. the same dreams and hope for recovery. thank you for sharing our story, pain, hopes and dreams.

    warmest regards, lisag

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