1 00:00:05,094 --> 00:00:08,130 Affects one million people in the United States. 2 00:00:08,130 --> 00:00:11,275 Less than half the doctors in this country know the name of this illness. 3 00:00:11,275 --> 00:00:13,200 I don't know of another illness like that. 4 00:00:13,707 --> 00:00:18,125 This is probably the craziest story I have ever heard of in my life. 5 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. 6 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. 7 00:00:30,720 --> 00:00:34,241 The doctor had said to me, "Everything you're feeling is in your head." 8 00:00:34,241 --> 00:00:36,578 I had a blackout. When I came to I couldn't read a word. 9 00:00:38,915 --> 00:00:41,253 I disappeared entirely and no one knew why. 10 00:00:41,253 --> 00:00:44,461 Among the people who hadn't a clue was me. 11 00:00:44,461 --> 00:00:47,839 Except for the doctors, nobody doubted I was really sick. 12 00:00:47,839 --> 00:00:50,671 It's a story that you need to see to believe. 13 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. 14 00:00:54,806 --> 00:00:56,088 Why am I so darn tired all the time? 15 00:00:56,088 --> 00:00:58,252 Chronic Fatigue Sundrome. 16 00:00:58,252 --> 00:01:00,162 Chronic Fatigue Syndrome. Chronic Fatigue Syndrome. 17 00:01:00,162 --> 00:01:02,472 La Fatigue Chronique. Chronic Fatigue Syndrome? 18 00:01:02,472 --> 00:01:05,007 No, that can't be right. You're too sick. 19 00:01:05,007 --> 00:01:08,538 Hi. I'm Jennifer Brea. I'm Kiran Chitanvis. 20 00:01:08,538 --> 00:01:11,701 And this is our Kickstarter Campaign for Canary In A Coal Mine, 21 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 22 00:01:15,875 --> 00:01:19,786 most misunderstood diseases - Myalgic Encephalomyelitis. 23 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. 24 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 25 00:01:29,209 --> 00:01:33,033 was possible. In order to make this film, we need your help. Take a look. 26 00:01:33,033 --> 00:01:38,426 I was at a Chinese restaurant with some friends and when the check came 27 00:01:38,426 --> 00:01:44,934 I couldn't sign my name. My brain was burning. 28 00:01:44,934 --> 00:01:50,354 He said maybe I was stressed or depressed or sad or 29 00:01:50,354 --> 00:01:55,074 most implausibly that I wanted to be sick. 30 00:01:55,074 --> 00:01:59,685 We doctors are the most arrogant of professionals. 31 00:01:59,685 --> 00:02:03,162 I've got the answer right here, ladies and gentlemen. 32 00:02:03,162 --> 00:02:04,863 To everything that ails you! 33 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. 34 00:02:09,949 --> 00:02:13,011 If you could, you know, get a younger wife, you would feel better. 35 00:02:13,011 --> 00:02:19,143 Ones gotta insist that this is a physical disease, that this is not a psychiatric disease. 36 00:02:19,143 --> 00:02:21,472 It's an acquired form of an immunodeficiency disorder. 37 00:02:21,472 --> 00:02:25,921 If you go back historically, you can see illnesses very similar to this called 38 00:02:25,921 --> 00:02:32,093 many different things. Toxins can insidiously creep in to every aspect of our 39 00:02:32,093 --> 00:02:36,053 lives, flipping certain individuals who've might otherwise be resistant to an 40 00:02:36,053 --> 00:02:40,896 infection. The severity of the illness is equivalent to 41 00:02:40,896 --> 00:02:45,571 congestive heart failure. We think that there is very very likely to be some 42 00:02:45,571 --> 00:02:48,282 sort of infectious culprit. It was just a 43 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 44 00:02:53,580 --> 00:02:55,832 horrid name, Chronic Fatigue Syndrome. 45 00:02:55,832 --> 00:03:00,515 I was frustrated and normally I would write 46 00:03:00,515 --> 00:03:03,173 in a journal to process my experience but I 47 00:03:03,173 --> 00:03:08,411 had lost the ability to write, and so that's why I started filming these video 48 00:03:08,411 --> 00:03:13,184 diaries, and it was really just a personal space to process what I was feeling 49 00:03:13,184 --> 00:03:17,455 and to sort of deal with some of that anger 50 00:03:17,455 --> 00:03:19,822 of no one knows what's wrong with me, 51 00:03:19,822 --> 00:03:20,734 no one has a treatment for me 52 00:03:20,734 --> 00:03:23,608 and everything that I love and care about 53 00:03:23,608 --> 00:03:25,741 is slipping away. 54 00:03:25,741 --> 00:03:27,700 You might saying to yourself, if I really couldn't 55 00:03:27,700 --> 00:03:34,743 stand up, why would I be filming it? Well, I kind of 56 00:03:34,743 --> 00:03:40,913 think that someone should see this. 57 00:03:40,913 --> 00:03:51,161 As I dug deeper, I realized that my symptoms 58 00:03:51,161 --> 00:03:54,105 followed a pattern and that there were millions 59 00:03:54,105 --> 00:03:56,494 of people around the world who had my disease 60 00:03:56,494 --> 00:03:59,904 As I shared my story on facebook, old friends 61 00:03:59,904 --> 00:04:02,401 from college and high school sort of coming 62 00:04:02,401 --> 00:04:03,822 out of the woodwork to share their stories. 63 00:04:03,822 --> 00:04:05,722 They didn't have M.E. but they had other 64 00:04:05,722 --> 00:04:09,745 chronic illnesses, auto immune diseases and 65 00:04:09,745 --> 00:04:14,544 I started to realize that, you know, this is actually 66 00:04:14,544 --> 00:04:16,658 a universal story. Our approach in making 67 00:04:16,658 --> 00:04:19,166 this film is to give the audience a really 68 00:04:19,166 --> 00:04:21,414 subjective view into the lives of people 69 00:04:21,414 --> 00:04:23,074 with this disease. What we really want to do 70 00:04:23,074 --> 00:04:25,664 is to bring the audience in and to make people 71 00:04:25,664 --> 00:04:28,915 feel for the first time what it's like to 72 00:04:28,915 --> 00:04:33,331 live with this devastating illness. It's just beyond any words. 73 00:04:33,331 --> 00:04:35,496 The participants in the film are doing a lot 74 00:04:35,496 --> 00:04:38,211 of self-filmed footage and it really gives 75 00:04:38,211 --> 00:04:40,348 you a visceral view into their lives in a 76 00:04:40,348 --> 00:04:42,315 way that you would never get by bringing a 77 00:04:42,315 --> 00:04:43,961 film crew into somebody else's house. 78 00:04:43,961 --> 00:04:47,214 Taking on a project like this is completely insane. 79 00:04:47,214 --> 00:04:50,827 It's difficult to travel everytime we go, 80 00:04:50,827 --> 00:04:54,415 you know, one hour from Princeton to New York, we 81 00:04:54,415 --> 00:04:56,603 have to pack all of my own food. It's like 82 00:04:56,619 --> 00:04:59,484 there's more gear for to take care of me than 83 00:04:59,484 --> 00:05:02,442 there is like camera gear we're packing in the car 84 00:05:02,442 --> 00:05:05,049 for the shoot. She conducts the interviews for most of the shoots 85 00:05:05,187 --> 00:05:07,969 from a different room and conducts them over skype 86 00:05:07,969 --> 00:05:09,644 through a teleprompter. 87 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, 88 00:05:15,127 --> 00:05:17,884 there's a crew halfway around the world shooting. 89 00:05:17,884 --> 00:05:22,460 In addition to a few, new technological things we're gonna be trying out. 90 00:05:22,460 --> 00:05:25,048 Some tricks up our sleeves. Got a few tricks. 91 00:05:25,048 --> 00:05:28,830 The diagnosis of M.E. is really in a place 92 00:05:28,830 --> 00:05:32,285 where something like epilepsy or multiple 93 00:05:32,285 --> 00:05:34,954 sclerosis was a hundred to even thirty years ago. 94 00:05:34,954 --> 00:05:40,130 And how many more diseases will this happen to unless our approach changes. 95 00:05:40,130 --> 00:05:44,647 There's $16 million dollars in male-pattern baldness 96 00:05:44,647 --> 00:05:47,740 and we got $3 million bucks going to Chronic Fatigue Syndrome. 97 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?" 98 00:05:53,838 --> 00:05:57,694 There's no way we're gonna go into the mall and show our numbers. 99 00:05:57,694 --> 00:06:00,736 We can't even walk to the mailbox." (laughing) 100 00:06:00,736 --> 00:06:06,339 Even though we often feel like, whatever it is that we are grappling with, no one 101 00:06:06,339 --> 00:06:10,040 else can understand the fact is that we will 102 00:06:10,040 --> 00:06:12,070 all have that experience of coming across an 103 00:06:12,070 --> 00:06:13,872 obstacle that feels insurmountable. 104 00:06:13,872 --> 00:06:16,410 There was a future you take for granted everyday 105 00:06:16,410 --> 00:06:19,075 and never articulate to yourself and yet 106 00:06:19,075 --> 00:06:21,456 it's always there and when you come down 107 00:06:21,456 --> 00:06:23,957 with an illness that has no end, it strips 108 00:06:23,957 --> 00:06:27,120 away that idea of a future. 109 00:06:27,120 --> 00:06:29,618 When we're in that moment that everything 110 00:06:29,618 --> 00:06:32,284 changes, how do we react? 111 00:06:32,284 --> 00:06:34,625 When I got sick, he took care of me. 112 00:06:34,625 --> 00:06:38,981 But I'd rather carry you around all my life than have anything happen to you. 113 00:06:38,981 --> 00:06:42,857 We kept saying, you know, don't get discouraged, you never know what's around 114 00:06:42,857 --> 00:06:44,695 the corner. Things can change. 115 00:06:44,695 --> 00:06:49,395 I have this belief that if I can read a lot of science 116 00:06:49,395 --> 00:06:57,416 and do a lot of self-experimentation that I can turn this 117 00:06:57,416 --> 00:06:59,477 thing around. We believe in this story and 118 00:06:59,477 --> 00:07:02,169 we're gonna do everything we can to see this 119 00:07:02,169 --> 00:07:06,613 film happen. Yes, we would hope to be taken as seriously as male-pattern baldness 120 00:07:06,613 --> 00:07:09,768 but I am not looking for any miracles here. 121 00:07:09,768 --> 00:07:13,756 No one can promise a cure but one very important step towards that goal is 122 00:07:13,756 --> 00:07:15,810 visibility. There are things that could be 123 00:07:15,810 --> 00:07:18,196 happening today that would improve the lives 124 00:07:18,196 --> 00:07:21,059 of patients with living with M.E. Visibility means more 125 00:07:21,059 --> 00:07:22,848 research. It means not having to wait 5 126 00:07:22,848 --> 00:07:28,317 years for a diagnosis. Visibility means not having doctors give you advice that 127 00:07:28,317 --> 00:07:30,551 can cause you harm. Visibility means that people with 128 00:07:30,551 --> 00:07:34,377 M.E. would no longer be forcibly institutionalized because 129 00:07:34,377 --> 00:07:36,869 their doctor that has never heard of their disease. 130 00:07:36,869 --> 00:07:40,199 Right now, to most of the world, we are invisible. 131 00:07:40,199 --> 00:07:42,596 Fifty Thousand dollars is what we need to 132 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 133 00:07:47,577 --> 00:07:49,629 film that we dream of, that's just the beginning. 134 00:07:49,629 --> 00:07:51,817 And we're going to need a lot of help to get there. 135 00:07:51,817 --> 00:07:53,856 Kickstarter is an all-or-nothing campaign 136 00:07:53,856 --> 00:07:56,800 and if we don't reach our funding goal, then 137 00:07:56,800 --> 00:07:59,802 we don't get to keep any of what we have raised. 138 00:07:59,802 --> 00:08:02,311 Up to this point, we've shot about a week's 139 00:08:02,311 --> 00:08:05,034 worth of footage and just imagine what we 140 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 141 00:08:10,189 --> 00:08:13,765 in the New Jersey-New York area but around the world. 142 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 143 00:08:18,948 --> 00:08:22,529 and say, "Hi! I'm Jen and I have Myalgic Encephalomyelitis" 144 00:08:22,529 --> 00:08:25,827 and they would actually know what the f@#$ that was. 145 00:08:25,934 --> 00:08:29,769 Go to our Kickstarter page, check out the link and make a donation to the film. 146 00:08:30,384 --> 00:08:33,802 You can also follow us on Twitter or Facebook 147 00:08:33,802 --> 00:08:33,813 148 00:08:33,813 --> 00:08:40,413 or even just pass along either the Kickstarter link, the Facebook Page or the Twitter handle 149 00:08:40,413 --> 00:08:43,251 or preferably all of the above. Or all the above!!! 150 00:08:43,251 --> 00:08:46,546 The biggest way you can help us is by 151 00:08:46,546 --> 00:08:46,546 152 00:08:46,546 --> 00:08:48,383 spreading the word and then scroll down 153 00:08:48,475 --> 00:08:51,260 and check out some of our other video 154 00:08:51,306 --> 00:08:54,436 as well as the awesome rewards by writers and 155 00:08:54,436 --> 00:08:57,579 artists who are also living with M.E. 156 00:08:57,579 --> 00:09:01,198 Join us on our mission to give a true face 157 00:09:01,198 --> 00:09:03,031 to this disease that's so misunderstood. 158 00:09:03,031 --> 00:09:06,940 Most of us look at what's around us and see 159 00:09:06,940 --> 00:09:08,927 very little and yet we have the capacity to 160 00:09:08,927 --> 00:09:11,413 see infinity in the smallest of things. 161 00:09:11,413 --> 00:09:17,182 This is our life and everyday we're just so grateful for it. 162 00:09:17,182 --> 00:09:21,180 Plus you learn from everything you survive.