Suggestion for CFSAC Youtube posters...........................

Discussion in 'Fibromyalgia Main Forum' started by denis321, Nov 1, 2009.

  1. denis321

    denis321 New Member

    Thank you for making the CFSAC meeting easily available.

    I suggest that if you uploaded the videos to Youtube that at some point, you tell CFSAC or Dr. Wanda Jones the number of hits on your videos.

    This is because if people are watching the videos on Youtube or other sites, they might not go to the official government website and will miss being counted on their system.

  2. quanked

    quanked Member

    very good point.
  3. Spinetti

    Spinetti New Member


    Wanda Jones has been very responsive. I sent her an email thanking her for conducting the meeting and for the webcast. She sent me a nice note right back from her Blackberry.

    We should all be grateful to Khalyal for getting the videos up so quickly on YouTube. They are a great resource.
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    We can help too by posting a message on each YouTube recording. Sometimes news media will cover videos on YouTube just because they have a lot of viewers.

    Anything and everything will help.

  5. Khalyal

    Khalyal New Member

    These are really good ideas, both notifying Dr. Jones of hit counts AND commenting. I will email her right away. I got about 5k on mine so far, too. Luminescentfeeling, you did a SUPERB job, and I don't know how you did it. I flat gave out after a few hours of it. Awesome work!

    [This Message was Edited on 11/02/2009]
  6. Spinetti

    Spinetti New Member

    Thank you very much! Getting those videos up was so important.

    I sent my brother the link to Dr. Joan Grobstein's video yesterday writing, "If you want to understand what this definition thing is all about, here it all is in five minutes."

    And, she got Peter White in there, too!

    Here's the URL to Dr. Grobstein's testimony.

    I'd like to see it go viral.
    [This Message was Edited on 11/02/2009]
  7. skeptik2

    skeptik2 Member


    these videos were heartstopping...thank you for making them
    available to us. Grateful doesn't begin to say what I feel.

    I also feel long-awaited validation; righteous anger that we have
    had to wait so long (thanks to the incompetent CDC and the
    play-along tactics of a certain patient dot org; amazement
    of the technology that allowed this all to be viewable; thankful
    that the 'newbies' are going to finally be
    able to understand more about their illness; hope that finally there
    will be some action taken to protect our civil rights (to appropriate
    diagnosis and treatment when they become available); humble
    love for the WPI and their people who never gave up the fight; and
    finally, I somehow feel honor, if that's possible, for the patients, and
    for their courage in just living with this terrible disease for sometimes

    I feel good...about me, and about you all.

    p.s. YES, keep writing Dr. Jones and the CFSAC and telling all the numbers.
    I don't know if they will count the ones from utube in their tallies, but a
    record might be made , and kept for the future archives... hopefully.
  8. Khalyal

    Khalyal New Member

    ...and got an email back from her this morning.

    I wrote her:
    Dear Dr. Jones,
    Some us who watched the CFSAC via webcast recorded and posted video of the meeting on Youtube. It's been brought to my attention that perhaps we should let you know how many "hits' these videos are getting, as some people may be watching these rather than the archived videos on the NIH website.

    So far, the 8 vids that i posted have received around 5000 hits. I'm including links so that you can see the hits, and some of the comments being left.

    By the way, thank you so much for all of the work you do and the help that you have been in getting these meetings broadcast. It's been an awesome tool for a homebound community!

    Khaly Castle

    Here's what she wrote back:

    Thanks Khaly! Cort alerted me to the postings, and while I looked briefly at one site, I'm not tech-y enough to use YouTube to learn what you've shared. Wow! That's exactly why we've opened this up. Wanda