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"Under our skin" movie for ME/CFS?

m1she11e

m1she11e

Senior Member
Messages
333
Location
Florida
In the 29 years I have been sick, I have not really gotten into the advocacy side of this illness. Infact, I could really relate to the reporter who recently "came out" with having CFS. I dont mention a word of it on my Facebook and only close friends and my family know that I am ill. Its all too much to explain...we all know the deal.

Over and over I am seeing trailers for "under our skin." This movie was done SO well. CFS/ME and the whole Oslers web and so on make for a really good story too! Im wondering how Lyme hit the nail on the head with their movie and why we dont have anything like it.

Under our skin is very smart in using the beautiful blond girl, teens, men and the kind of people all advertisers know to use. Everything about it really grabs peoples attention and makes them think "hey, that could be me." Im noticing people posting links to the movie that dont even have Lyme. It seems every time I see anything on CFS/ME they use the same stereo typical kind of woman.

So, my question is...does anyone know the story of who decided to do "under our skin" and why nothing really well done and well thought out has ever been done for CFS/ME?
I sure would love to have something like that to show the world. If some one is working on it, I would love to donate money to THAT kind of a cause. I might even come out of the closet and post it on my Facebook...:eek:
 
m1she11e

m1she11e

Senior Member
Messages
333
Location
Florida
Thanks Dannybex. I did just look at the trailer and I am appreciative of anyone doing anything. It didnt really "get me" like under our skin. I would be interested in seeing the whole thing. Under our skin just really captures peoples attention. I have a bit of trouble with the "invisible" part. I think people assume that if you are sick it would have to be some how visible. I dont think CFS is INVISIBLE. I have days I look REALLY tired. If you are housebound and not getting exercise and sun you are gonna have to look a bit sickly. There are people who have trouble walking and talking etc. The whole invisible thing might do us more harm than good.

Again, I appreciate that Mr. Carlson did something I DID NOT. Just doesnt seem to quite have the "punch" under our skin does to me.
 
m1she11e

m1she11e

Senior Member
Messages
333
Location
Florida
Thank you for the links to this movie. I apologize for being out of the "know." Im so glad that they are working on this. It sounds like they are putting all the right components and people together. My only concern is that they might make it too much about XMRV. Everything else I am reading about it looks very exciting!!
 
C

Crappy

Senior Member
Messages
113
Location
TX
I spend way more time than I should in here, and I didn't know about either of these.

So thanks for starting the topic, and thanks for the info.:thumbsup:
 
Emmanuelle

Emmanuelle

Messages
68
Location
New Jersey, U.S.
I agree, it would be great to have a really slick, informative, convincing film about ME/CFS.

I bought the Rik Carlson film-- it was very good. (My only hesitancy in showing it to family and friends was a brief bit by Rik where, after talking about how utterly tired he was, etc., he said he got a dog and started taking walks with it ... Cort asked him about it, and Rik explained that he had a heart condition or something and was told he HAD to do something about it (get more "active" ).( I may be retelling it poorly ... apologies to Cort and Rik.) Anyway, sounds like an unfortunate editing choice. But It was a good movie-- lots of interviews and a couple of doctors.

And I liked Kim Snyder's "I Remember Me". It's been a while since I've seen it, but it was quite moving. It's on Netflix instant viewing.

I'm really looking forward to "What About ME" ! It looks great from the trailers.
 
Emmanuelle

Emmanuelle

Messages
68
Location
New Jersey, U.S.
I just remembered, that I woke up this morning with an overwhelming desire to talk to Michael Moore about doing a docu. on ME/CFS ... I think the "conspiracy" angle would appeal to him! But, I can't imagine myself actually contacting him ... Anyone out there feeling bold? He's "controversial"-- but so are we. :)
 
Emmanuelle

Emmanuelle

Messages
68
Location
New Jersey, U.S.
ALSO-- M1chelle-- I DO feel invisible-- even though I look tired and all that, people still look at me and say, "You look fine" or they just have that skeptical look... (Especially those of us who have gained weight with ME/CFS-- I KNOW people are just thinking "You'd feel better if you'd just get a little exercise ...") The image people have of illness is someone gaunt and pale and pitifully downcast eyes... This is not (generally) a "wasting" illness as they used to say. It's "visible" to me and my family, because we know what I USED to look like. But people can't "see" the exhaustion, the pain, the neurological dysfunction ... I read about a woman who shaved her head-- like a chemo patient-- so she would have something visible. I understood that ...

Anyway, thanks for the idea about a new film. Let's keep kicking it around.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Thank you for donating, Mark.

I agree that we absolutely need our own "Under Our Skin." There isn't a substitute for the way our story can be told by film, imo. So, I have been very excited about What About ME. I am thankful for I Remember Me and Rik Carlson's film, but agree, we still desperately need an "Under Our Skin."

I wrote the producers about a year ago suggesting a separate fund be set up to accept investments from pwME on a pro rata basis equal to the film's other investors, with profits, if any, going to WPI. I would certainly scrape together whatever money I could to invest. They said they were going to do that, but it seems they haven't. I have written them again about this. I will let you guys know about any response.

The release date target has been pushed back into 2012. I would like to see production fast-tracked; we need our voice heard and this film will be a lot of our voice.
 
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