WEBVTT 00:00:05.094 --> 00:00:08.130 Affects one million people in the United States. 00:00:08.130 --> 00:00:11.275 Less than half the doctors in this country know the name of this illness. 00:00:11.275 --> 00:00:13.200 I don't know of another illness like that. 00:00:13.707 --> 00:00:18.125 This is probably the craziest story I have ever heard of in my life. 00:00:18.125 --> 00:00:23.783 It was what should have been the happiest moment of my life. I was engaged to the love of my life. 00:00:23.783 --> 00:00:30.720 I was a PhD student at Harvard. And then...WHAM! I had a hundred-and-five-degree-fever that lasted for 10 days. 00:00:30.720 --> 00:00:34.241 The doctor had said to me, "Everything you're feeling is in your head." 00:00:34.241 --> 00:00:36.578 I had a blackout. When I came to I couldn't read a word. 00:00:38.915 --> 00:00:41.253 I disappeared entirely and no one knew why. 00:00:41.253 --> 00:00:44.461 Among the people who hadn't a clue was me. 00:00:44.461 --> 00:00:47.839 Except for the doctors, nobody doubted I was really sick. 00:00:47.839 --> 00:00:50.671 It's a story that you need to see to believe. 00:00:50.671 --> 00:00:54.806 Are you tired all the time? Tired. Tired all the time. I just slept all the time. 00:00:54.806 --> 00:00:56.088 Why am I so darn tired all the time? 00:00:56.088 --> 00:00:58.252 Chronic Fatigue Sundrome. 00:00:58.252 --> 00:01:00.162 Chronic Fatigue Syndrome. Chronic Fatigue Syndrome. 00:01:00.162 --> 00:01:02.472 La Fatigue Chronique. Chronic Fatigue Syndrome? 00:01:02.472 --> 00:01:05.007 No, that can't be right. You're too sick. 00:01:05.007 --> 00:01:08.538 Hi. I'm Jennifer Brea. I'm Kiran Chitanvis. 00:01:08.538 --> 00:01:11.701 And this is our Kickstarter Campaign for Canary In A Coal Mine, 00:01:11.701 --> 00:01:15.875 a film that takes a look into the lives of people living with one of the world's 00:01:15.875 --> 00:01:19.786 most misunderstood diseases - Myalgic Encephalomyelitis. 00:01:19.786 --> 00:01:23.744 It's a disease suffered by a subset of people diagnosed each year with Chronic Fatigue Syndrome. 00:01:23.744 --> 00:01:29.209 Had I not become ill with M.E. three years ago, I would have never believed the story 00:01:29.209 --> 00:01:33.033 was possible. In order to make this film, we need your help. Take a look. 00:01:33.033 --> 00:01:38.426 I was at a Chinese restaurant with some friends and when the check came 00:01:38.426 --> 00:01:44.934 I couldn't sign my name. My brain was burning. 00:01:44.934 --> 00:01:50.354 He said maybe I was stressed or depressed or sad or 00:01:50.354 --> 00:01:55.074 most implausibly that I wanted to be sick. 00:01:55.074 --> 00:01:59.685 We doctors are the most arrogant of professionals. 00:01:59.685 --> 00:02:03.162 I've got the answer right here, ladies and gentlemen. 00:02:03.162 --> 00:02:04.863 To everything that ails you! 00:02:04.863 --> 00:02:09.949 We just don't have doctors going to guys and saying if you would change the color of your hair, you would feel better. 00:02:09.949 --> 00:02:13.011 If you could, you know, get a younger wife, you would feel better. 00:02:13.011 --> 00:02:19.143 Ones gotta insist that this is a physical disease, that this is not a psychiatric disease. 00:02:19.143 --> 00:02:21.472 It's an acquired form of an immunodeficiency disorder. 00:02:21.472 --> 00:02:25.921 If you go back historically, you can see illnesses very similar to this called 00:02:25.921 --> 00:02:32.093 many different things. Toxins can insidiously creep in to every aspect of our 00:02:32.093 --> 00:02:36.053 lives, flipping certain individuals who've might otherwise be resistant to an 00:02:36.053 --> 00:02:40.896 infection. The severity of the illness is equivalent to 00:02:40.896 --> 00:02:45.571 congestive heart failure. We think that there is very very likely to be some 00:02:45.571 --> 00:02:48.282 sort of infectious culprit. It was just a 00:02:48.282 --> 00:02:53.580 group of people, a committee that happened to be pulled together by the CDC that came up with this perfectly 00:02:53.580 --> 00:02:55.832 horrid name, Chronic Fatigue Syndrome. 00:02:55.832 --> 00:03:00.515 I was frustrated and normally I would write 00:03:00.515 --> 00:03:03.173 in a journal to process my experience but I 00:03:03.173 --> 00:03:08.411 had lost the ability to write, and so that's why I started filming these video 00:03:08.411 --> 00:03:13.184 diaries, and it was really just a personal space to process what I was feeling 00:03:13.184 --> 00:03:17.455 and to sort of deal with some of that anger 00:03:17.455 --> 00:03:19.822 of no one knows what's wrong with me, 00:03:19.822 --> 00:03:20.734 no one has a treatment for me 00:03:20.734 --> 00:03:23.608 and everything that I love and care about 00:03:23.608 --> 00:03:25.741 is slipping away. 00:03:25.741 --> 00:03:27.700 You might saying to yourself, if I really couldn't 00:03:27.700 --> 00:03:34.743 stand up, why would I be filming it? Well, I kind of 00:03:34.743 --> 00:03:40.913 think that someone should see this. 00:03:40.913 --> 00:03:51.161 As I dug deeper, I realized that my symptoms 00:03:51.161 --> 00:03:54.105 followed a pattern and that there were millions 00:03:54.105 --> 00:03:56.494 of people around the world who had my disease 00:03:56.494 --> 00:03:59.904 As I shared my story on facebook, old friends 00:03:59.904 --> 00:04:02.401 from college and high school sort of coming 00:04:02.401 --> 00:04:03.822 out of the woodwork to share their stories. 00:04:03.822 --> 00:04:05.722 They didn't have M.E. but they had other 00:04:05.722 --> 00:04:09.745 chronic illnesses, auto immune diseases and 00:04:09.745 --> 00:04:14.544 I started to realize that, you know, this is actually 00:04:14.544 --> 00:04:16.658 a universal story. Our approach in making 00:04:16.658 --> 00:04:19.166 this film is to give the audience a really 00:04:19.166 --> 00:04:21.414 subjective view into the lives of people 00:04:21.414 --> 00:04:23.074 with this disease. What we really want to do 00:04:23.074 --> 00:04:25.664 is to bring the audience in and to make people 00:04:25.664 --> 00:04:28.915 feel for the first time what it's like to 00:04:28.915 --> 00:04:33.331 live with this devastating illness. It's just beyond any words. 00:04:33.331 --> 00:04:35.496 The participants in the film are doing a lot 00:04:35.496 --> 00:04:38.211 of self-filmed footage and it really gives 00:04:38.211 --> 00:04:40.348 you a visceral view into their lives in a 00:04:40.348 --> 00:04:42.315 way that you would never get by bringing a 00:04:42.315 --> 00:04:43.961 film crew into somebody else's house. 00:04:43.961 --> 00:04:47.214 Taking on a project like this is completely insane. 00:04:47.214 --> 00:04:50.827 It's difficult to travel everytime we go, 00:04:50.827 --> 00:04:54.415 you know, one hour from Princeton to New York, we 00:04:54.415 --> 00:04:56.603 have to pack all of my own food. It's like 00:04:56.619 --> 00:04:59.484 there's more gear for to take care of me than 00:04:59.484 --> 00:05:02.442 there is like camera gear we're packing in the car 00:05:02.442 --> 00:05:05.049 for the shoot. She conducts the interviews for most of the shoots 00:05:05.187 --> 00:05:07.969 from a different room and conducts them over skype 00:05:07.969 --> 00:05:09.644 through a teleprompter. 00:05:09.721 --> 00:05:14.958 I can interview people whether I'm in the next room or at home in bed and, you know, 00:05:15.127 --> 00:05:17.884 there's a crew halfway around the world shooting. 00:05:17.884 --> 00:05:22.460 In addition to a few, new technological things we're gonna be trying out. 00:05:22.460 --> 00:05:25.048 Some tricks up our sleeves. Got a few tricks. 00:05:25.048 --> 00:05:28.830 The diagnosis of M.E. is really in a place 00:05:28.830 --> 00:05:32.285 where something like epilepsy or multiple 00:05:32.285 --> 00:05:34.954 sclerosis was a hundred to even thirty years ago. 00:05:34.954 --> 00:05:40.130 And how many more diseases will this happen to unless our approach changes. 00:05:40.130 --> 00:05:44.647 There's $16 million dollars in male-pattern baldness 00:05:44.647 --> 00:05:47.740 and we got $3 million bucks going to Chronic Fatigue Syndrome. 00:05:47.740 --> 00:05:53.838 My husband has asked me, you know, "Jen, what do you care more about, your health or this film?" 00:05:53.838 --> 00:05:57.694 There's no way we're gonna go into the mall and show our numbers. 00:05:57.694 --> 00:06:00.736 We can't even walk to the mailbox." (laughing) 00:06:00.736 --> 00:06:06.339 Even though we often feel like, whatever it is that we are grappling with, no one 00:06:06.339 --> 00:06:10.040 else can understand the fact is that we will 00:06:10.040 --> 00:06:12.070 all have that experience of coming across an 00:06:12.070 --> 00:06:13.872 obstacle that feels insurmountable. 00:06:13.872 --> 00:06:16.410 There was a future you take for granted everyday 00:06:16.410 --> 00:06:19.075 and never articulate to yourself and yet 00:06:19.075 --> 00:06:21.456 it's always there and when you come down 00:06:21.456 --> 00:06:23.957 with an illness that has no end, it strips 00:06:23.957 --> 00:06:27.120 away that idea of a future. 00:06:27.120 --> 00:06:29.618 When we're in that moment that everything 00:06:29.618 --> 00:06:32.284 changes, how do we react? 00:06:32.284 --> 00:06:34.625 When I got sick, he took care of me. 00:06:34.625 --> 00:06:38.981 But I'd rather carry you around all my life than have anything happen to you. 00:06:38.981 --> 00:06:42.857 We kept saying, you know, don't get discouraged, you never know what's around 00:06:42.857 --> 00:06:44.695 the corner. Things can change. 00:06:44.695 --> 00:06:49.395 I have this belief that if I can read a lot of science 00:06:49.395 --> 00:06:57.416 and do a lot of self-experimentation that I can turn this 00:06:57.416 --> 00:06:59.477 thing around. We believe in this story and 00:06:59.477 --> 00:07:02.169 we're gonna do everything we can to see this 00:07:02.169 --> 00:07:06.613 film happen. Yes, we would hope to be taken as seriously as male-pattern baldness 00:07:06.613 --> 00:07:09.768 but I am not looking for any miracles here. 00:07:09.768 --> 00:07:13.756 No one can promise a cure but one very important step towards that goal is 00:07:13.756 --> 00:07:15.810 visibility. There are things that could be 00:07:15.810 --> 00:07:18.196 happening today that would improve the lives 00:07:18.196 --> 00:07:21.059 of patients with living with M.E. Visibility means more 00:07:21.059 --> 00:07:22.848 research. It means not having to wait 5 00:07:22.848 --> 00:07:28.317 years for a diagnosis. Visibility means not having doctors give you advice that 00:07:28.317 --> 00:07:30.551 can cause you harm. Visibility means that people with 00:07:30.551 --> 00:07:34.377 M.E. would no longer be forcibly institutionalized because 00:07:34.377 --> 00:07:36.869 their doctor that has never heard of their disease. 00:07:36.869 --> 00:07:40.199 Right now, to most of the world, we are invisible. 00:07:40.199 --> 00:07:42.596 Fifty Thousand dollars is what we need to 00:07:42.596 --> 00:07:47.577 make it through the completion of production and have a film that we're really proud of but to make the 00:07:47.577 --> 00:07:49.629 film that we dream of, that's just the beginning. 00:07:49.629 --> 00:07:51.817 And we're going to need a lot of help to get there. 00:07:51.817 --> 00:07:53.856 Kickstarter is an all-or-nothing campaign 00:07:53.856 --> 00:07:56.800 and if we don't reach our funding goal, then 00:07:56.800 --> 00:07:59.802 we don't get to keep any of what we have raised. 00:07:59.802 --> 00:08:02.311 Up to this point, we've shot about a week's 00:08:02.311 --> 00:08:05.034 worth of footage and just imagine what we 00:08:05.034 --> 00:08:10.189 could do with the funds to shoot four weeks, six weeks, and to do it not just 00:08:10.189 --> 00:08:13.765 in the New Jersey-New York area but around the world. 00:08:13.765 --> 00:08:18.948 We want this film to have such an impact that I could walk up to anyone on the street 00:08:18.948 --> 00:08:22.529 and say, "Hi! I'm Jen and I have Myalgic Encephalomyelitis" 00:08:22.529 --> 00:08:25.827 and they would actually know what the f@#$ that was. 00:08:25.934 --> 00:08:29.769 Go to our Kickstarter page, check out the link and make a donation to the film. 00:08:30.384 --> 00:08:33.802 You can also follow us on Twitter or Facebook 00:08:33.802 --> 00:08:33.813 00:08:33.813 --> 00:08:40.413 or even just pass along either the Kickstarter link, the Facebook Page or the Twitter handle 00:08:40.413 --> 00:08:43.251 or preferably all of the above. Or all the above!!! 00:08:43.251 --> 00:08:46.546 The biggest way you can help us is by 00:08:46.546 --> 00:08:46.546 00:08:46.546 --> 00:08:48.383 spreading the word and then scroll down 00:08:48.475 --> 00:08:51.260 and check out some of our other video 00:08:51.306 --> 00:08:54.436 as well as the awesome rewards by writers and 00:08:54.436 --> 00:08:57.579 artists who are also living with M.E. 00:08:57.579 --> 00:09:01.198 Join us on our mission to give a true face 00:09:01.198 --> 00:09:03.031 to this disease that's so misunderstood. 00:09:03.031 --> 00:09:06.940 Most of us look at what's around us and see 00:09:06.940 --> 00:09:08.927 very little and yet we have the capacity to 00:09:08.927 --> 00:09:11.413 see infinity in the smallest of things. 00:09:11.413 --> 00:09:17.182 This is our life and everyday we're just so grateful for it. 00:09:17.182 --> 00:09:21.180 Plus you learn from everything you survive.