Historical video on CFS, please watch

[Andrew]

Does anyone know the title or source of this video perchance?

It appears to be "Liviing Hell: The Real World of Chronic Fatigue Syndrome."

 

[Doogle]

I believe this is it. http://www.mefmaction.net/Home/NewsletterQuest/QuestLibrary/Q7/tabid/407/Default.aspx
'LIVING HELL" - a CFIDS documentary written, produced and directed by Lennie Copeland, and produced by Authentic Pictures in association with the CFIDS Foundation of San Francisco. Credit Card purchases (for both Canada and the U.S.A.) 1-800-577-4747 or for payment by personal check to: RESOLUTION INC., P.O. Box 2284, Attention: CFIDS, South Burlington, Vermont 05403 - Cost: In U.S. Funds - $29.95 for individuals, $99.95 for organizations PLUS $4.00 for shipping - Delivery 3 to 4 weeks after order. Proceeds support the services of the non-profit CFIDS Foundation.

http://docs.google.com/viewer?a=v&q...nf9MlO&sig=AHIEtbTvjVJ6Rr1Jv2QqfJ1MDPMLsqny3g

Living Hell
PRODUCTION: Authentic Pictures - Mill
Valley, CA
SPONSOR/DISTRIBUTOR: CFIDS Foundation
- San Francisco, CA
Lennie Copeland, Producer
Lennie Copeland, Director
Lennie Copeland, Writer
Stewart Copeland, Music
Michael Anderson, Camera
Joan Chapman, Kiki Tormey, Editor

 

[valentinelynx]

I find it hard to believe..

This video was made around the time I became ill, the spring of '93. I didn't realize I was ill for almost 2 years (very powerful denial!). It was only when I decided to look into this "CFS" thing that I'd heard some people say they had (I was skeptical), that I realized that was what was wrong with me, why I couldn't exercise anymore (had been dancing 6 hours a week and going to community college for pre-med 12 hours a day before I got sick). I was in medical school when I figured it out, somehow dragging through the days, but feeling horrible the whole time. Then I got real bad. Then I went to see Dr. Jay Goldstein. He helped a lot. That was so long ago. I'm in relapse now; things are not as bad as they got in 1996, but close. Strange how little has changed in the last 17 years.

 

[Wayne]

Also On Youtube

I just ran across this same video last night on Youtube and also found it fascinating to watch. It's posted in six different sections, about 10 minutes each (I've only watched the first section so far). The author has posted many other videos on Youtube about ME/CFS, XMRV, etc. This link will take you to all the videos available. Looks like a wealth of information.

 

[anne_likes_red]

Welcome to the forums Valentinelynx Another high achiever struck a devastating blow with this nasty thing.

(I was in denial the first few years too....thought if I pretended hard enough it would go away!)

Hope you'll pull out of your relapse soon.

Anne.


PS Cheers Wayne - great link.

 

[Mort]

This video is indeed "Living Hell", which remains as the best CFS video ever made. Even though it was made in 1993, nothing much has changed and almost no progress has been made in CFS therapy. Living Hell is very realistic, interviewing very suffering patients and not ones who seem well. It is tough to take, as it shows the truth about becoming disabled with CFS. Newer videos, such as "I Remember Me" and "Invisible" are simply fairy tales, as they interview CFS patients who are leading fairly normal lives and not suffering. Do not let anyone who does not have CFS see these two trivial videos! They will say you are not sick!

Living Hell has most of our major players, such as Drs. Cheney, Peterson, Bell and Klimas. They are younger, but their message then and now are about the same. "Historical" video is true, as they present their mid-1980s - early 90s battle with NIH and CDC as it was happening. And, the founder of the CFIDS Assn of America, Marc Iverson, has a large part in this film, which I think he had made, during his tenure. He was too realistic about CFS, and also a CFS victim, so he resigned under fire ca 1997. Too bad, as the Assn has gone downhill ever since then.

Watch this important video and insist your family and friends also see it. You may have to hire four strong men to tie them in chairs and tape their eyelids open, but make them watch it!!!

Mort Caldwell in SW PA, near Pittsburgh
Biomedical Engineer and PE
Forced to quit work in 1995 due to CFS

 

[jewel]

Thanks for the background info on this video, Mort. I never saw it back then... it's distressing how little has changed. Welcome to the forum, also! J.

 

[Andrew]

I'm going to email links to these movies to people I know. At the very least, they will understand us more, and maybe they will inform others. I'm also going to send links to my congress reps. Maybe you would want to do something similar.

Below is a copy of my first email.

----------------------------------------
Hi,

Amazingly, I found some good coverage of Chronic Fatigue Syndrome.

Here is a major documentary from 1993. Well done and shows a few of the problems with CFS, although they neglected to talk about how many of the Incline Village group developed cancer shortly after becoming ill.

http://vimeo.com/9714250


The next is a news special that was made a few years later. It is much shorter, but adds some information not found in the first one.

http://vimeo.com/13048135


Sadly, not much has changed since then.

 

[Mark]

I think I've now added all 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.

And huge thanks to everyone involved in all these videos, and for finding and posting them here.

 

[Daffodil]

Mort Caldwell has passed away.

RIP, Mort