I just received this note from a relative who saw the video.
Thanks for sharing this beautiful, moving video about ME/CFS. (What does the ME stand for?) I would like to make a donation to the Whittemore Peterson institute that is referenced at the end of the video, unless you have another organization that treats your disease that you think is better. It is a shame that more has not been done to research and understand how to defeat this monster. It would be a privilege to do a little bit to change that.
"Absolutely incredible! Thank you to everyone involved in making this video and matching it with the perfect song. This will likely be circulated again and again and far more people will view it than any of us could ever imagine. It is the internet version of the traveling exhibit of “Faces” but with the advantage of reaching a much greater audience. Watching this video brought tears to my eyes because it manages to show the depth of suffering while still providing a ray of hope, a rare combination and a major accomplishment. I too hope there are more of these videos in the future. What a brilliant piece of work this is! Thank you, thank you, thank you!!!
The best youtube video on ME by far! Thank you everyone involved!
I didn't do any of the hard work to get this done, but I'd like to make a recommendation even though it's after the fact. Those who worked on it, please let me know what you think of my idea.
Because we've been beat up so much, I think we sometimes fall into a trap of underplaying the facts and that hurts us a lot imo. I see Dr. Klimas doing this sometimes, like in the quote that was used in the video, something like 'CFS can be as disabling as late-stage AIDS.' This statement is not correct. Actually, ME/CFIDS has been shown to be, on average as disabling as end-stage AIDS.' There is a big difference in the impression these statements make. The misleading use of modifiers like 'can', 'some', 'many', etc. when they are not appropriate, in communicating about the disease is a big problem, imo. It's the main tactic our persecutors use, other than lying, to make ME seem less serious or the science more uncertain than it really is.
Can we replace the quote in the video with something like this quote from Osler's Web, p.365, footnote?: The average ME/CFS patient "feels every day significantly the same as an AIDS patient feels two months before death." -Mark Loveless, M.D., AIDS and ME/CFS specialist
Glad you liked it. You make a really good point. If I had seen this quote I would have used it. Unfortunately it can't be changed now because we'd end up losing our current address and that would break everybody's link to it who has put it up on sites like this one, FB, Blogs, etc...
I copied the quote and hopefully can find it again if I'm looking to use one like that again.
Thanks so much for your comments and posting other comments on here everyone. They really mean a lot to us.