To Ryan who said "If I was teaching a class to medical students, I'd have them memorize definitions. If I wanted to pull heartstrings and move mountains, I would tell stories"
I absolutely agree that together we are stronger together and believe me, as a person of color, the civil rights movement is close to my heart. I didn't mean to intend that you should dryly spell out definitions in your documentary. What I meant is that since you plan on going into the history of the disease, I thought it would be a good idea to point out that the definition of CFS that was was coined during the outbreaks in Incline Village eventually became very diluted with multiple definitions and then became conflated with ME. Not that your documentary is going to be another Osler's Web, but I just thought that a small part of the documentary should be directed to that small piece of history and maybe even point out why and to who's advantage this may be....and then to how much suffering and social injustice that has caused patients, all the way from confusing physicians to making research very messy. So yea, in this sense, semantics is kinda important. And words do matter. Thoughts about this piece of history?
In no way do I think that the film should focus on the differences and divide the commmunity, but like Purple and you said, there is a lot of power in words and using the right words. We don't want the film to cause more confusion. Have you seen "Under Our Skin," a documentary about chronic Lyme disease? They had to spell out the difference between acute lyme and chronic lyme and a whole bunch of stuff to get their point across and to avoid confusion for the lay audience since many people do get lyme and get well very quickly with just a short course of antibiotics. Even with all the semantics, mnemonics, and details, the documentary and the stories it told was still very moving, heartfelt and eye-opening.
When Ryan first announced the project, I remember asking him several times (haha sorry for the bother!) about making sure he focuses on the 25% worst ME cases because just like Purple said, when we think of the disease, we often think of the WORST cases. When people think of AIDS and cancer, they think of the absolute worse, but plenty of people look fine and live functional lives with those illnesses. When we encounter those people who are highly functional, we don't question whether or not they have AIDS or cancer. We just accept it. But I'm not so sure that will happen right away with ME - people may end up questioning the diagnosis if you aren't in the worst 25%. With such an invisible illness, you don't even have to be moderately functional to be questioned. I don't want that to happen.
So the more that I think more about it, I do that it is important to also show patients who look fine too, just like what Sasha said too: "I think it's important to show that transition, those two faces of the disease, otherwise the audience might go away thinking that the people they've seen lying in bed looking like death have the real illness and those they meet on the street looking fine aren't sick - whereas in fact, they're usually the same person." Sometimes (maybe once a year), those on the severe end of the ME spectrum still have to leave their house or push themselves to leave their house and then be told by well-meaning people that they "don't look sick" and so must not be sick since they are out of the house that one day. Showing crashes from simple activity would be very powerful.
I babble on - cognitive dysfunction. I hope I made sense!
I absolutely agree that together we are stronger together and believe me, as a person of color, the civil rights movement is close to my heart. I didn't mean to intend that you should dryly spell out definitions in your documentary. What I meant is that since you plan on going into the history of the disease, I thought it would be a good idea to point out that the definition of CFS that was was coined during the outbreaks in Incline Village eventually became very diluted with multiple definitions and then became conflated with ME. Not that your documentary is going to be another Osler's Web, but I just thought that a small part of the documentary should be directed to that small piece of history and maybe even point out why and to who's advantage this may be....and then to how much suffering and social injustice that has caused patients, all the way from confusing physicians to making research very messy. So yea, in this sense, semantics is kinda important. And words do matter. Thoughts about this piece of history?
In no way do I think that the film should focus on the differences and divide the commmunity, but like Purple and you said, there is a lot of power in words and using the right words. We don't want the film to cause more confusion. Have you seen "Under Our Skin," a documentary about chronic Lyme disease? They had to spell out the difference between acute lyme and chronic lyme and a whole bunch of stuff to get their point across and to avoid confusion for the lay audience since many people do get lyme and get well very quickly with just a short course of antibiotics. Even with all the semantics, mnemonics, and details, the documentary and the stories it told was still very moving, heartfelt and eye-opening.
When Ryan first announced the project, I remember asking him several times (haha sorry for the bother!) about making sure he focuses on the 25% worst ME cases because just like Purple said, when we think of the disease, we often think of the WORST cases. When people think of AIDS and cancer, they think of the absolute worse, but plenty of people look fine and live functional lives with those illnesses. When we encounter those people who are highly functional, we don't question whether or not they have AIDS or cancer. We just accept it. But I'm not so sure that will happen right away with ME - people may end up questioning the diagnosis if you aren't in the worst 25%. With such an invisible illness, you don't even have to be moderately functional to be questioned. I don't want that to happen.
So the more that I think more about it, I do that it is important to also show patients who look fine too, just like what Sasha said too: "I think it's important to show that transition, those two faces of the disease, otherwise the audience might go away thinking that the people they've seen lying in bed looking like death have the real illness and those they meet on the street looking fine aren't sick - whereas in fact, they're usually the same person." Sometimes (maybe once a year), those on the severe end of the ME spectrum still have to leave their house or push themselves to leave their house and then be told by well-meaning people that they "don't look sick" and so must not be sick since they are out of the house that one day. Showing crashes from simple activity would be very powerful.
I babble on - cognitive dysfunction. I hope I made sense!