Discussion in 'Fibromyalgia Main Forum' started by mezombie, Oct 23, 2006.

  1. mezombie

    mezombie Member

    This is a great tool for CFS/ME advocacy!

    I posted this originally on Oct. 14 as a reply to Karinaxx's thread on the Sleepydust video, but think the reference wasn't picked up on by anyone.

    This video diary features a caretaker, and also shows his very ill wife. Be forewarned, these are difficult to watch.

    Here's the URL:

    You can also get to it by going to and typing CFS/ME in the search box on the top right of the page.

    I don't know how anyone can doubt this disease is "real" after watching them!

    This guy is clearly trying to advocate for M.E. Let's try to help him!

    Those of you on this board who are interested in advocacy, this is a great opportunity to educate government agenecies, physicians, the media and others who think we are simply "fatigued"!

    Send them one of the videos by simply clicking on "Share Video" below the actual video. A window will open and all you have to do is enter an e-mail address and click "send".

    How easy is that?

    [This Message was Edited on 10/24/2006]
  2. maedaze

    maedaze New Member

    Is there something i can download to watch these videos? I can only get it at 4 second 'bites' but want to watch them all. Or is my computer too basic?? I havn't got a dvd player on it if that helps.

    I do get the picture and sound but only 4 seconds at a time. then have to wait another 5-10 seconds to get the next 4 seconds.

    Any help would be greatly appreciated
    cheers maedaze
  3. dononagin

    dononagin New Member

    My firewalls at work won't let me view this so I will have to try again at home. Thanks for sharing!
  4. mezombie

    mezombie Member

    Carla-nl may be able to help you with your computer problem. I know you don't need a DVD player to watch it.

    It's possible your computer's video player is a bit old and can't keep up with the video stream. Have you tried downloading the most recent version of Realplayer or something from Windows?

    It's still pretty powerful, even with the glitches you're dealing with, don't you think?
    [This Message was Edited on 10/23/2006]
  5. mezombie

    mezombie Member

    You're welcome!
  6. Marta608

    Marta608 Member

    ... and my heart aches for them - and for all who live with severe ME/CFS. This video must somehow get to someone who has the ability to DO something other than theorize!

  7. apl

    apl New Member

    Thank you so much for pointing this out! - I could not find it via the youtube search before.

    I'm going to watch all the videos, and post supportive comments where I can. They've really shared something important - evidence of hope, love, compassion, and courage, all in the face of such adversity.
  8. mezombie

    mezombie Member

    Let's e-mail all the "unbelievers" and include this website! I'm going to start with the CDC!
  9. mezombie

    mezombie Member

    Come on everybody, there are <b>so</b> many other government agencies, organizations, and individuals who need to see this!
  10. apl

    apl New Member

    It might also be good to direct this to the attention of patient advocacy and other CFS/ME organizations, like:

    (I think NCF would be very interested, as they seem to keep a close watch on severe ME/CFS sufferers)


    Does anyone else have any other organizations to add to the list? I know there are quite a few I'm missing, here in the US and in other countries.

    I see this as a possibly very positive partnership between sufferers/care-givers and patient advocacy.

    You can't get any closer or louder than personal documentaries that are free to millions of people on the web.
    [This Message was Edited on 10/23/2006]
  11. darude

    darude New Member

    There are seven videos several of which include his wife. This is for real and I was this bad in the beginning.
  12. mezombie

    mezombie Member

    I was as sick as the wife in this video when I first came down with CFS. It may be hard to believe because most people don't see patients that are this sick.
  13. Marta608

    Marta608 Member

    Folks, I thought about this during the night when my mind works best. While I agree that these poor people (and most of us with this illness) are in wretched straits, I don't think we're the ones to become their advocates. This video speaks to us because we relate but I think we're letting our usual extreme empathy override good sense because we have this illness. Coming from us, I think attention would appear contrived and/or overdramatized. After all, look at the reactions right here among us, then think what people who already have doubts would assume!

    Instead of us, I suggest we ask Rich Carson to watch the videos, to make an executive decision, and then get the URL or videos to members of the "team" who are willling to spend valuable time addressing a name change. I won't get on a rant about that but think about it: we're crashing about, looking for an advocate and we already have one. We need to empower him now on our behalf.

    Tell me what you think - and if you agree Mezombie, why not post the URL to Rich's attention on the board asking that he weigh in on this?

  14. 1sweetie

    1sweetie New Member

    I have tried 3 times to access the video and can't pull it up. Help!

    Also FYI each time I try it, Spyware Doctor is finding spyware on the site which is probably not unsual for most sites though.
  15. mezombie

    mezombie Member

    You can also access it by going to and typing CFS/ME in the search box on the upper right. I hope that helps!
  16. mezombie

    mezombie Member

    Thank you for your thoughtful response.

    I agree that this is difficult viewing for many on this board. I originally posted this in quite a low key, but someone else posted another thread with a more dramatic title.

    I've changed the title of this thread, and have added a warning about the effect of watching this in the opening post.

    By the way, most of the advocates you are thinking of are ill, including Rich Carson. But I will post to him directly.

    However, the membership of this board is very diverse, and I suspect there are people on here who are interested in advocacy. I don't think we need to go through "gatekeeepers" to get this information out. That is the beauty of the internet: many voices can be heard. And that's a good thing! I used to participate in the CFIDS Association's Lobby Days, but stopped partially because I felt it was important that new faces were seen!

    And, by the way, I was a CFIDS advocate. I worked with several well-known organizations, and spoke to a number of government officials. I even testified before the CFSAC (which anyone is free to do).

    It's hard for most people to do that, but any advocates here clearly can send e-mails to those who need to see this.

    I've found from experience that numbers do count when it comes to advocacy. Government officials are, after all, beholden to us. I have seen how many voices can change public policy, not just with CFIDS. Read my bio.
  17. jole

    jole Member

    I believe it is really that bad. BUT....IF we didn't know it could be that bad, I wouldn't believe it. Sorry, just being truthful. The reason I know it is that bad is because I was not far behind that either in the beginning.

    It is very painful to watch her, and I couldn't take much of it. Bless you for your efforts. I hope they are successful, but I can't even get my PCP to understand that I need something stronger than Ultram on my bad days, and she knows me!!

    Hate to be so negative. I know nothing can be done if we don't fight, but right now I just haven't got the energy.
    Go for it, and good luck. You are a very special person.
    Friends - Jole
  18. mezombie

    mezombie Member

    Thanks for your support!
  19. mezombie

    mezombie Member

    Check out my directions to 1sweetie above on how to get to the videos.
  20. mezombie

    mezombie Member

    Thanks for e-mailing the video info to Oprah! Way to go!

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