1 00:00:09,170 --> 00:00:14,170 2 00:00:16,640 --> 00:00:19,143 (strained breathing) 3 00:00:44,500 --> 00:00:48,937 (strained breathing continues) 4 00:00:48,939 --> 00:00:52,076 (thud) 5 00:01:11,662 --> 00:01:14,365 (sigh) 6 00:01:36,787 --> 00:01:39,290 (thud) 7 00:01:46,697 --> 00:01:50,064 Omar Wasow : Directions to Princeton Hospital. 8 00:01:50,066 --> 00:01:53,303 GPS Service : Getting directions to Princeton Animal Hospital. 9 00:01:53,671 --> 00:01:57,806 Omar : Directions to Princeton Hospital. 10 00:01:57,808 --> 00:02:01,045 GPS : Getting directions to Princeton Animal Hospital. 11 00:02:02,680 --> 00:02:05,116 Omar : Princeton Hospital. 12 00:02:06,284 --> 00:02:09,584 GPS : Here's Princeton Animal Hospital. It's about two and a half miles south. 13 00:02:09,586 --> 00:02:11,053 Jennifer Brea : Can you ask one more time? 14 00:02:11,055 --> 00:02:14,055 Omar : Hospitals near Princeton. 15 00:02:14,057 --> 00:02:16,526 GPS : Searching for youth hostels and Inns. 16 00:02:24,634 --> 00:02:29,571 (machines beeping) 17 00:02:29,573 --> 00:02:31,474 What were you saying love? 18 00:02:32,643 --> 00:02:35,812 Just one has to be careful. 19 00:02:36,546 --> 00:02:44,886 If you say too little they can't help you and if you say too much 20 00:02:44,888 --> 00:02:49,393 they think you're a kind of mental patient. 21 00:03:26,764 --> 00:03:29,697 Jennifer : From as early as I can remember 22 00:03:29,699 --> 00:03:32,368 I wanted to swallow the world whole. 23 00:03:33,871 --> 00:03:38,038 Dreaming about all the places I would go 24 00:03:38,040 --> 00:03:41,110 and the things I would see 25 00:03:41,177 --> 00:03:45,647 I thought if I dreamed hard enough anything was possible 26 00:03:45,649 --> 00:03:48,218 A film by Jennifer Brea. 27 00:03:48,451 --> 00:03:51,485 Today we talked with a U.S. student studying abroad in Beijing. 28 00:03:51,487 --> 00:03:55,125 Jennifer : Well I know some some of us were kind of scared atually because... 29 00:03:58,961 --> 00:04:03,167 We are constantly telling ourselves a story 30 00:04:03,901 --> 00:04:06,000 about who we are 31 00:04:06,002 --> 00:04:08,438 and where we're going. 32 00:04:09,740 --> 00:04:11,975 For example 33 00:04:12,508 --> 00:04:14,675 that's my husband, Omar. 34 00:04:14,677 --> 00:04:16,577 I met him when I was twenty-five. 35 00:04:16,579 --> 00:04:17,945 (people cheering and laughing) 36 00:04:17,947 --> 00:04:21,618 We were both at Harvard getting our PhDs 37 00:04:22,519 --> 00:04:25,990 Three months later I knew that I wanted to marry him. 38 00:04:26,656 --> 00:04:33,461 I meet Jen when she's visiting campus and I'm like, "Wow who's that? She's really cute!" And... 39 00:04:33,463 --> 00:04:34,029 Really? 40 00:04:34,031 --> 00:04:35,966 Yeah and... 41 00:04:36,766 --> 00:04:38,500 but I've got no game, right? 42 00:04:38,502 --> 00:04:41,902 So the whole session I'm thinking like, "How do I start a conversation with her?" 43 00:04:41,904 --> 00:04:44,171 And then at the end of the session she comes over and talks to me. 44 00:04:44,173 --> 00:04:49,243 And I was like yes! And she says like, "what is going on tonight?" 45 00:04:49,245 --> 00:04:55,218 and I was just like, "this never happens to me! This never happens to me." 46 00:05:02,692 --> 00:05:08,596 Person filming : Omar holding the back of a kayak flailing all over the place to try to get in. 47 00:05:08,598 --> 00:05:13,202 Hopefully this is just a kayaking trip, not a metaphor. 48 00:05:13,937 --> 00:05:17,708 Jennifer : I mean sure, we all know nothing lasts forever 49 00:05:19,976 --> 00:05:23,379 I just thought I would have more time. 50 00:05:29,887 --> 00:05:34,391 And then one day I got a fever of a hundred and four point seven degrees. 51 00:05:36,793 --> 00:05:41,230 I got better but something wasn't right. 52 00:05:43,567 --> 00:05:50,641 I would go to the kitchen to get a glass of water and then I wouldn't be able to move again. 53 00:05:52,175 --> 00:05:57,480 I don't know what I did to myself. I don't think I can get up off the couch. 54 00:05:57,947 --> 00:06:00,416 (grunt) 55 00:06:02,819 --> 00:06:12,293 I know you might be saying to yourself if I really couldn't stand up why would I be filming it? Well... 56 00:06:12,295 --> 00:06:21,538 I kind of think that someone should see this. 57 00:06:30,146 --> 00:06:34,183 That first year I had six infections. 58 00:06:34,584 --> 00:06:37,851 (whispering) Okay, turn off the light. 59 00:06:37,853 --> 00:06:44,527 I basically would get out of bed, go to class, and then I was in bed again.( 60 00:06:46,096 --> 00:06:53,569 I'd go to the doctor and he would tell me, "you're just dehydrated. Everyone gets stressed." 61 00:06:53,769 --> 00:07:01,044 So I don't know if this is going to happen at the doctor's office or not but I... 62 00:07:03,279 --> 00:07:06,482 I figure it's good to just keep documenting. 63 00:07:09,252 --> 00:07:12,823 The right side of my face feels numb. 64 00:07:13,023 --> 00:07:17,828 I feel like my brain is misfiring. 65 00:07:19,362 --> 00:07:26,670 Sometimes I have these strange little moments where like my hand will make a fist and I can't open it. 66 00:07:30,740 --> 00:07:38,279 Sometimes I wouldn't be able to speak, I'd have no thoughts, no words. 67 00:07:38,281 --> 00:07:48,255 (making noises) 68 00:07:48,257 --> 00:07:54,029 I would be sensitive to light and the slightest sound could cause excruciating pain. 69 00:07:54,031 --> 00:07:57,334 (loud whirl of fan) 70 00:08:08,778 --> 00:08:10,978 Omar : I'm gonna stop recording. 71 00:08:10,980 --> 00:08:14,718 Jennifer : No, don't. 72 00:08:15,117 --> 00:08:17,721 It's fine. 73 00:08:23,259 --> 00:08:27,264 Omar : This is perhaps the least chivalrous thing I've ever done in my life. 74 00:08:29,331 --> 00:08:33,202 Okay I'm gonna rest here for a minute. 75 00:08:34,270 --> 00:08:37,772 It happened all of a sudden. I don't know... 76 00:08:37,774 --> 00:08:41,812 it's like someone turned off the lights or something. 77 00:08:47,484 --> 00:08:52,887 ♪ (tense orchestral music builds) 78 00:08:52,889 --> 00:08:56,023 Jennifer : I saw every kind of specialist. 79 00:08:56,025 --> 00:09:05,467 Infectious disease doctors, endocrinologists, cardiologists, and finally a neurologist. 80 00:09:05,469 --> 00:09:09,373 My neurologist diagnosed me with conversion disorder. 81 00:09:10,807 --> 00:09:17,011 He said that all of my symptoms, even the fever, the infection for which I took antibiotics 82 00:09:17,013 --> 00:09:23,420 were being caused by some distant trauma I might not even be able to remember. 83 00:09:25,956 --> 00:09:31,493 Either that or I was just really stressed out about my final exams. 84 00:09:31,495 --> 00:09:34,996 (birds chirping) 85 00:09:34,998 --> 00:09:38,098 (water lapping) 86 00:09:38,100 --> 00:09:41,002 (wind rustling trees) 87 00:09:41,004 --> 00:09:44,307 (birds chirping) 88 00:10:02,158 --> 00:10:06,330 For the next several years I spent most of my time bedridden. 89 00:10:15,938 --> 00:10:18,873 I thought maybe I had a rare disease. 90 00:10:18,875 --> 00:10:21,477 Maybe I was dying. 91 00:10:22,846 --> 00:10:28,719 And then I went online and found thousands of other people all over the world just like me. 92 00:10:29,485 --> 00:10:33,821 Yeah I'm completely bed ridden. I have lost the ability to walk. 93 00:10:33,823 --> 00:10:41,195 I crawl from my bed to my bathroom and I just think, "this s my life. What a shit hole!" 94 00:10:41,197 --> 00:10:46,200 It's the cognitive problems that are the most disabling. 95 00:10:46,202 --> 00:10:49,939 I live in a dark room twenty-four seven. 96 00:10:51,975 --> 00:10:54,209 I have ME/CFS. 97 00:10:54,211 --> 00:10:56,344 That's Chronic Fatigue Syndrome 98 00:10:56,346 --> 00:11:03,287 or Myalgic Encephalomyelitis I think is the term that you're supposed to use now. 99 00:11:03,586 --> 00:11:07,321 I've have some kind of ME/CFS for about eight years now. 100 00:11:07,323 --> 00:11:10,391 I was ten years old when I first got sick. 101 00:11:10,393 --> 00:11:12,627 I was a really competitive skier. 102 00:11:12,629 --> 00:11:17,834 At one point I was ranked seventeenth on the entire East Coast for mogul skiing. 103 00:11:18,100 --> 00:11:23,872 This is the couch. These three cushions are where I spend my life. 104 00:11:23,874 --> 00:11:30,314 And out there that's that's all my old life. 105 00:11:32,048 --> 00:11:34,983 Larry King : The Chronic Fatigue Syndrome. 106 00:11:34,985 --> 00:11:40,454 It's been called the Yuppie Flu, Epstein Barr, and a living hell by those who suffer from it. 107 00:11:40,456 --> 00:11:45,359 There's still no adequate medical explanation for it. The experts say it could be triggered by viruses. 108 00:11:45,361 --> 00:11:51,534 We all get tired but is it Chronic Fatigue Syndrome? Some believe that's a made up condition. 109 00:11:58,107 --> 00:12:01,209 You have Chronic Fatigue ME. 110 00:12:01,211 --> 00:12:05,514 You're in that percentage of people who are severely disabled. 111 00:12:06,048 --> 00:12:14,922 Based on your duration of illness you are still in that category that we call in sort of the acute phase. 112 00:12:14,924 --> 00:12:21,697 And the CDC statistic's that if you've been sick five years you're unlikely to recover. I agree with that statistic. 113 00:12:21,932 --> 00:12:27,935 People reach a plateau of function that's better than they were at baseline 114 00:12:27,937 --> 00:12:30,106 but not that they have a full recovery. 115 00:13:21,357 --> 00:13:23,759 (glasses clinking) 116 00:13:31,735 --> 00:13:35,172 I had no idea if it would be months 117 00:13:36,740 --> 00:13:39,142 or years 118 00:13:40,710 --> 00:13:43,580 or decades. 119 00:13:46,115 --> 00:13:54,055 It was like I had died, but was forced to watch as the world moved on. 120 00:13:54,057 --> 00:13:58,795 (children playing in distance) 121 00:14:00,363 --> 00:14:05,432 If I completely disappear and I'm in this bed and I can do nothing 122 00:14:05,434 --> 00:14:09,472 then it's like I don't even exist or that I never existed. 123 00:14:11,673 --> 00:14:19,115 And then what was the point of it all? Of being born in the first place? 124 00:14:25,788 --> 00:14:32,627 You know and honestly there are a lot of days when I just feel like I'm doing a good job 125 00:14:32,629 --> 00:14:37,801 by just holding it together and not killing myself. 126 00:14:38,768 --> 00:14:42,105 Like I'm really proud of that. 127 00:14:42,639 --> 00:14:47,844 And it's not... I really don't want to die. Like I really don't want to die. 128 00:14:52,849 --> 00:14:56,186 But at a certain point it's hard to call this living and... 129 00:15:02,759 --> 00:15:10,966 I think the grief of all those things I might not do or see or have or... 130 00:15:17,539 --> 00:15:19,875 (moaning) 131 00:15:22,278 --> 00:15:23,846 (sighing) 132 00:15:41,865 --> 00:15:43,633 Yeah so it's sad. 133 00:15:50,506 --> 00:15:56,243 (ringing) 134 00:15:56,245 --> 00:15:59,014 Hey Jen. 135 00:16:01,717 --> 00:16:03,783 Hi. 136 00:16:03,785 --> 00:16:07,890 Welcome to My World of One Room. 137 00:16:08,423 --> 00:16:13,194 I have been severely unwell for eight years. 138 00:16:13,196 --> 00:16:16,564 Jennifer : I found Jessica online. 139 00:16:16,566 --> 00:16:19,934 She was so young and had lost so much. 140 00:16:19,936 --> 00:16:23,273 Yet somehow, she found a way to keep going. 141 00:16:23,873 --> 00:16:26,674 So I asked if I could film her 142 00:16:26,676 --> 00:16:32,349 I mean, if we have to do it ten minutes at a time over like many days, we'll get there. 143 00:16:32,548 --> 00:16:33,716 Yeah. 144 00:16:34,750 --> 00:16:39,487 ♪ Happy birthday to you, Happy birthday to you ♪ 145 00:16:39,489 --> 00:16:44,927 ♪ Happy birthday dear Jessica, Happy birthday to you ♪♪ 146 00:16:45,662 --> 00:16:48,098 (laughing) 147 00:16:48,264 --> 00:16:51,464 - Come on, come on. (blowing) - Excellent. 148 00:16:51,466 --> 00:16:57,173 Jessica : I get to my birthday and for me, that's a really difficult date 149 00:16:57,307 --> 00:17:01,144 because I think it's another year in bed. 150 00:17:01,311 --> 00:17:04,114 I need your help. 151 00:17:06,348 --> 00:17:09,883 (paper ripping) 152 00:17:09,885 --> 00:17:13,222 Too loud. 153 00:17:19,695 --> 00:17:22,363 I remember my sixteenth birthday in bed. 154 00:17:22,365 --> 00:17:29,439 I remember my seventeenth, eighteenth, nineteenth, twentieth, twenty-first. 155 00:17:31,273 --> 00:17:33,307 Pretty. Look. 156 00:17:33,309 --> 00:17:39,447 I made it into a chair for a couple of seconds for my twenty-second but other than that I was in bed. 157 00:17:39,449 --> 00:17:42,152 You need your injection, don't you. 158 00:17:42,484 --> 00:17:44,285 Injection mid-champagne. 159 00:17:44,287 --> 00:17:46,688 Mid-champagne. 160 00:17:46,690 --> 00:17:55,298 And that for me is very, very scary because you don't realize when you're in a bubble quite how much time goes, you know? 161 00:17:58,268 --> 00:17:59,533 The everyday joy. 162 00:17:59,535 --> 00:18:00,801 (laughter) 163 00:18:00,803 --> 00:18:01,669 Happy birthday. 164 00:18:01,671 --> 00:18:03,472 Happy birthday. 165 00:18:05,008 --> 00:18:07,807 Have some champagne, dear. 166 00:18:07,809 --> 00:18:16,219 ♪ (slow piano music plays) 167 00:18:30,866 --> 00:18:37,840 Jessica : When I was fourteen I suffered with a flu-like virus. 168 00:18:39,442 --> 00:18:48,951 I was sleeping all through school and I had the teacher shouting at me saying, "Jessica! Pull your head off that table." 169 00:18:53,056 --> 00:18:59,496 I remained in hospital for four years constantly. 170 00:19:00,663 --> 00:19:04,134 I was in a semi-coma. 171 00:19:08,104 --> 00:19:12,342 The doctors had no idea what to do. 172 00:19:13,108 --> 00:19:20,182 The nurses were getting frustrated at me for not getting better. 173 00:19:22,884 --> 00:19:26,019 They almost saw me as a lost cause. 174 00:19:26,021 --> 00:19:29,989 I'm very lucky to have a sister like you. 175 00:19:29,991 --> 00:19:33,428 You can't do makeup. Open. 176 00:19:33,628 --> 00:19:35,363 That'll do. 177 00:19:35,365 --> 00:19:36,764 I think it will. 178 00:19:36,766 --> 00:19:39,799 (laughter) 179 00:19:39,801 --> 00:19:41,469 When you were in that hospital 180 00:19:41,471 --> 00:19:47,210 and you couldn't move or speak, how did you stay sane? 181 00:19:48,377 --> 00:19:53,748 I stayed sane because I can do lots of things with my mind 182 00:19:53,750 --> 00:19:59,588 and I go to many different places all over the world in my mind. 183 00:20:00,455 --> 00:20:04,691 (seagulls cawing) 184 00:20:04,693 --> 00:20:13,269 I love Australia because I love the water and I'd love to go scuba diving there. 185 00:20:20,576 --> 00:20:29,483 As I jump into the water and have that freedom of my body moving but there being no sound 186 00:20:32,989 --> 00:20:42,465 and a multitude of different colors of fish calm you down and relax you. 187 00:20:46,201 --> 00:20:53,276 It becomes more and more magical and still there's that silence. 188 00:20:55,111 --> 00:20:58,612 (zipper unzipping) 189 00:20:58,614 --> 00:21:03,318 (straps tightening) 190 00:21:04,487 --> 00:21:05,819 (grunting and laughing) 191 00:21:05,821 --> 00:21:08,223 Awkward! 192 00:21:12,494 --> 00:21:19,799 Jessica : I suffer with severe osteoporosis now because I've been bedridden for so long with ME. 193 00:21:19,801 --> 00:21:23,472 So I have the bones of a hundred-year-old. 194 00:21:24,773 --> 00:21:32,514 I'm quite a tall girl. I've actually grown four inches in the time I've been bedridden. 195 00:21:32,748 --> 00:21:37,319 So I've never actually stood up at this height. 196 00:21:39,255 --> 00:21:46,629 About a month ago I touched the floor for the first time. 197 00:21:48,064 --> 00:21:51,131 You alright? Feet on the ground? 198 00:21:51,133 --> 00:21:52,932 Feet on the ground. 199 00:21:52,934 --> 00:21:55,471 (sighing) 200 00:21:55,837 --> 00:21:58,205 How's that? 201 00:21:58,207 --> 00:22:01,511 It's mental. Oh my goodness. 202 00:22:02,010 --> 00:22:05,211 When did you last do this? 203 00:22:05,213 --> 00:22:13,187 Not for about probably for eight years. 204 00:22:13,189 --> 00:22:15,122 Eight years. 205 00:22:15,124 --> 00:22:16,789 And you sat on the bed with Tom didn't you? 206 00:22:16,791 --> 00:22:20,562 Yeah but it didn't go like this. 207 00:22:21,130 --> 00:22:24,965 Stand on your feet. 208 00:22:24,967 --> 00:22:27,934 (sharp breath) 209 00:22:27,936 --> 00:22:35,477 Sleepy? Okay, come down my girl. 210 00:22:40,249 --> 00:22:49,759 (rustling) 211 00:23:13,048 --> 00:23:14,847 - Hi! - Hi, how's it going? 212 00:23:14,849 --> 00:23:18,754 New video is starting. There you are. 213 00:23:18,820 --> 00:23:23,923 I started filming more and more people all over the world from my bed. 214 00:23:23,925 --> 00:23:26,695 Camera speeds! 215 00:23:29,230 --> 00:23:30,898 Who am I going to be looking at? 216 00:23:30,900 --> 00:23:33,968 Oh you're looking at this camera right there. 217 00:23:33,970 --> 00:23:36,202 (speaking foreign language) 218 00:23:36,204 --> 00:23:39,707 I found out that my disease isn't rare at all. 219 00:23:39,709 --> 00:23:42,375 A million people in the US have it. 220 00:23:42,377 --> 00:23:43,209 (speaking Arabic) 221 00:23:43,211 --> 00:23:45,347 Seventeen million around the world. 222 00:23:49,218 --> 00:23:51,687 (speaking Spanish) 223 00:23:52,253 --> 00:23:56,125 That means it's twice as common as multiple sclerosis. 224 00:23:56,325 --> 00:23:59,528 Like MS, it's a spectrum disorder. 225 00:24:00,930 --> 00:24:06,933 I know people who can work and you'd never know from looking at them that they were sick. 226 00:24:06,935 --> 00:24:10,103 Who can walk a mile, but have cognitive problems. 227 00:24:10,105 --> 00:24:14,309 A quarter of us are homebound or bedridden. 228 00:24:18,047 --> 00:24:21,414 Saw someone collecting the other day for ME. 229 00:24:21,416 --> 00:24:24,817 That's the one where "I don't feel like going to work today." 230 00:24:24,819 --> 00:24:26,319 (audience laughing) 231 00:24:26,321 --> 00:24:29,222 Chronic fatigue syndrome. Yeah, I'm tired too. 232 00:24:29,224 --> 00:24:31,824 (laughing) 233 00:24:31,826 --> 00:24:36,531 Jen? Jen? 234 00:24:37,400 --> 00:24:42,238 Okay, let's lay down. 235 00:24:43,673 --> 00:24:48,243 So Jen is calling in. Can you see? 236 00:24:50,680 --> 00:24:51,614 Jen? 237 00:24:52,213 --> 00:24:54,847 Hey! There you are. You look comfy. 238 00:24:54,849 --> 00:24:57,051 Nancy, one. Take one. Mark. 239 00:24:57,053 --> 00:24:58,321 (slate clapping) 240 00:24:59,521 --> 00:25:03,923 I'm Nancy Klimas. I'm a clinical Immunologist which is the study of the immune systems. 241 00:25:03,925 --> 00:25:07,227 Clinical Immunology's a kind of a very small specialty. 242 00:25:07,229 --> 00:25:10,029 There aren't many people around that do clinical immunology. 243 00:25:10,031 --> 00:25:14,136 I was one of a kind. I was the only immunologist at my university. 244 00:25:16,305 --> 00:25:21,376 The year was '84, that was the year HIV hit the scene big time. 245 00:25:22,144 --> 00:25:27,815 My practice was people without HIV but people who didn't make antibody, 246 00:25:27,817 --> 00:25:29,885 people that were getting sick without explanation. 247 00:25:31,019 --> 00:25:35,988 A patient came in to see me and she had been brutalized by the health care system. 248 00:25:35,990 --> 00:25:39,226 She was terribly ill, she was profoundly fatigued. 249 00:25:39,228 --> 00:25:42,261 She'd been put on antidepressants without any depression. 250 00:25:42,263 --> 00:25:48,000 She'd been put on antipsychotics without any mental illness whatsoever. 251 00:25:48,002 --> 00:25:49,803 It was like shocking. 252 00:25:49,805 --> 00:25:51,805 So I was listening to her. She was just telling me this story. 253 00:25:51,807 --> 00:25:55,508 She says, "if you would just at least look at my immune system and see if there's something wrong." 254 00:25:55,510 --> 00:26:00,180 We had this amazing laboratory that could look at all kinds of parts of the immune system. 255 00:26:00,182 --> 00:26:01,914 So I put her through the whole nine yards. 256 00:26:01,916 --> 00:26:05,885 Everything we knew who had to do with the time. And I came back to four weeks later 257 00:26:05,887 --> 00:26:11,290 and I said I'm sorry to say that there's something terribly wrong with your immune system. 258 00:26:11,292 --> 00:26:17,029 The cells that are antiviral just don't do much in culture that can't kill all the virally infected targets 259 00:26:17,031 --> 00:26:19,833 you're making all kinds of inflammatory cytokines. 260 00:26:19,835 --> 00:26:24,337 This is a sick immune system. Well she burst into tears and I thought, oh my god. 261 00:26:24,339 --> 00:26:28,275 You know? Poor thing. I'm such an idiot I mean I must've said this wrong. 262 00:26:28,277 --> 00:26:32,513 I should have broken it to her... well she was crying with joy. It was joyful tears 263 00:26:32,515 --> 00:26:38,084 because she had been told by everyone there was absolutely nothing wrong with her; it had to be in her head. 264 00:26:38,086 --> 00:26:40,520 And I was telling her there was something terribly wrong with her 265 00:26:40,522 --> 00:26:47,494 and she was thrilled, happy, joyful because it wasn't in her head. 266 00:26:47,496 --> 00:26:50,463 So then this word of mouth thing happened. 267 00:26:50,465 --> 00:26:55,369 And I had about twenty-five patients and I did the same work up and there was a consistent look. 268 00:26:55,371 --> 00:26:57,037 ♪ (probing violin and xylophone music) 269 00:26:57,039 --> 00:27:02,478 So we published a paper that said that there was a natural killer cell deficiency. 270 00:27:02,545 --> 00:27:05,981 These cells that are antiviral couldn't kill viruses. 271 00:27:06,448 --> 00:27:12,052 This illness appeared to be a form of an acquired immune deficiency. 272 00:27:12,054 --> 00:27:18,257 Now if you go back historically, you can see illnesses very similar to this called many different things. 273 00:27:18,259 --> 00:27:22,330 ♪ (music swells) 274 00:27:22,498 --> 00:27:29,739 Over the last century, there have been roughly seventy outbreaks of a strikingly similar disease. 275 00:27:29,971 --> 00:27:36,043 In each case, often following an outbreak of a virus like Epstein Barr or coxsackie, 276 00:27:36,045 --> 00:27:41,017 a small percentage of people never seem to get better. 277 00:27:43,853 --> 00:27:48,291 For a long time, it was seen as a new form of polio. 278 00:27:49,892 --> 00:27:55,698 And later, encephalomyelitis, which means inflammation of the brain and spinal cord 279 00:27:56,298 --> 00:28:00,935 until an outbreak in the 1980s when it was given a new name. 280 00:28:01,403 --> 00:28:04,872 A mystery disease has struck the town of Incline Village, Nevada. 281 00:28:04,874 --> 00:28:06,606 A disease for which doctors have no cure. 282 00:28:06,608 --> 00:28:11,111 Doctors have diagnosed more than two hundred cases of the same illness in this area. 283 00:28:11,113 --> 00:28:15,649 In all of my years of training and practice, I've never seen anything quite like this. 284 00:28:15,651 --> 00:28:20,056 She's talking out of the lens? Okay. 285 00:28:21,557 --> 00:28:24,290 Jennifer : Do you remember the beginning of the outbreak 286 00:28:24,292 --> 00:28:29,296 of what would later come to be called Chronic Fatigue Syndrome? 287 00:28:29,298 --> 00:28:33,336 I can recall to this day those moments. 288 00:28:34,569 --> 00:28:39,974 One was an epidemic of apparent mono in a girl's basketball team. 289 00:28:40,241 --> 00:28:47,682 And by July, August we had over two hundred cases of adult viral-like syndrome. 290 00:28:48,317 --> 00:28:55,057 It wasn't that fact they were showing up sick, it was the fact that they remained sick as the years went by. 291 00:28:55,124 --> 00:29:02,964 They not only remained sick, their sickness actually evolved into something different than it was at the beginning. 292 00:29:03,132 --> 00:29:07,100 Now they were complaining of severe and debilitating fatigue. 293 00:29:07,102 --> 00:29:11,404 They began to complain of strange cognitive complaints. 294 00:29:11,406 --> 00:29:15,709 We were certain we were looking at something that we have never ever heard of before 295 00:29:15,711 --> 00:29:19,382 and began thinking about asking for help. 296 00:29:22,684 --> 00:29:27,421 Jennifer : When the CDC came out to investigate, they looked at patient's charts, 297 00:29:27,423 --> 00:29:32,595 they noted that all of their lab results were normal, and then they went skiing. 298 00:29:33,561 --> 00:29:39,632 Doctor William Reeves, that man in charge of investigating Chronic Fatigue for the CDC, 299 00:29:39,634 --> 00:29:44,973 told us over the phone that one, there is no viral cause for this problem, 300 00:29:45,106 --> 00:29:48,275 two, there are no immune system abnormalities in patients with Chronic Fatigue. 301 00:29:48,277 --> 00:29:56,152 And three, there are no clusters. So when asked about the illness at Lake Tahoe, he said that was hysteria. 302 00:30:04,559 --> 00:30:07,730 I was two during the Incline Village outbreak. 303 00:30:10,699 --> 00:30:15,037 Thirty years later we don't seem any closer. 304 00:30:15,636 --> 00:30:20,175 We know that ME can be triggered by viruses and bacterial infections. 305 00:30:20,608 --> 00:30:27,715 But we don't know if the infection hides in places where it's hard to measure, like the brain. 306 00:30:28,150 --> 00:30:32,855 Or if it's long gone but leaves in its wake an autoimmune disease. 307 00:30:33,288 --> 00:30:38,693 There are now a handful of specialists, but most patients will never get to see one. 308 00:30:40,162 --> 00:30:42,565 I was lucky. 309 00:30:43,464 --> 00:30:48,102 My doctor prescribed me an antiviral drug called Valcyte. 310 00:30:54,143 --> 00:30:57,710 Two days later I was walking again. 311 00:30:57,712 --> 00:31:05,921 (birds chirping) 312 00:31:12,124 --> 00:31:14,128 Hello! 313 00:31:16,765 --> 00:31:18,398 You alright? 314 00:31:18,400 --> 00:31:21,570 I'm good. I'm doing awesome! 315 00:31:22,471 --> 00:31:29,308 ♪ (marching band plays) 316 00:31:29,310 --> 00:31:31,510 Hey, how are you doing? 317 00:31:31,512 --> 00:31:33,646 Congratulations! 318 00:31:33,648 --> 00:31:38,418 (crowd cheering) 319 00:31:38,420 --> 00:31:42,525 Thirty-five! 320 00:31:47,528 --> 00:31:57,038 (crowd chanting) 321 00:31:58,272 --> 00:32:02,508 (car horn honking) 322 00:32:02,510 --> 00:32:11,617 (shouting) 323 00:32:11,619 --> 00:32:16,691 ♪ (bagpipes playing) 324 00:32:25,800 --> 00:32:27,834 I'm sorry please don't. 325 00:32:27,836 --> 00:32:31,738 Oh god. 326 00:32:31,740 --> 00:32:33,907 I'll get you some magnesium. 327 00:32:33,909 --> 00:32:36,645 Stop! I can't. 328 00:32:37,746 --> 00:32:44,086 I could feel everything in my head swelling pushing out my eyeballs. 329 00:32:46,788 --> 00:32:56,298 (crying out in pain) 330 00:32:56,832 --> 00:33:03,973 I would try to speak and the sounds that would come out of my mouth would be gibberish. 331 00:33:04,906 --> 00:33:07,507 (crying out) 332 00:33:07,509 --> 00:33:10,712 I can't understand, love. 333 00:33:26,428 --> 00:33:28,295 It's gonna pass. 334 00:33:28,297 --> 00:33:30,497 Ok. 335 00:33:30,499 --> 00:33:33,365 (trying to speak) 336 00:33:33,367 --> 00:33:35,870 Shh. 337 00:34:06,335 --> 00:34:07,401 How's Jen? 338 00:34:07,403 --> 00:34:11,771 Alright. She's much improved from two hours ago. 339 00:34:11,773 --> 00:34:16,412 You know, I still feel very lucky. 340 00:34:22,951 --> 00:34:25,651 Thank you. And fatherhood? 341 00:34:25,653 --> 00:34:26,789 (laughs) 342 00:34:27,822 --> 00:34:30,456 I can't imagine it any other way. 343 00:34:30,458 --> 00:34:32,260 - Yeah. - Yeah. 344 00:34:32,994 --> 00:34:37,396 There are moments when I see us through other people's eyes 345 00:34:37,398 --> 00:34:47,308 and somehow that's much sadder than when I'm just kind of living our life together. 346 00:34:48,309 --> 00:34:50,443 This is normal for us. Like... 347 00:34:50,445 --> 00:34:52,545 Jennifer : It's so normal. 348 00:34:52,547 --> 00:34:58,286 And it's only when other people observe how not normal it is 349 00:34:58,753 --> 00:35:03,491 that I'm forced to recalibrate 350 00:35:06,628 --> 00:35:10,265 and sit with how hard this is. 351 00:35:13,735 --> 00:35:19,240 You know what it is about being observed? It's that people feel sorry for me. 352 00:35:24,746 --> 00:35:26,514 And I don't know why that.... 353 00:35:28,016 --> 00:35:32,153 Jennifer : Baby, I'm so sorry. 354 00:35:33,922 --> 00:35:36,324 It hits a nerve. 355 00:36:01,782 --> 00:36:05,487 He's the guy that first introduced me to email ten years ago. 356 00:36:15,764 --> 00:36:19,699 Technology is not something that is oppositional to black people. 357 00:36:19,701 --> 00:36:21,503 Technology is opportunity. 358 00:36:25,474 --> 00:36:30,112 Jennifer : When I met Omar, I thought here's a guy who's going to change the world. 359 00:36:31,045 --> 00:36:33,880 Another movie, I think I've got one, the forty year old intern. 360 00:36:33,882 --> 00:36:40,556 Now I feel like if he's with me he can't become the person he was meant to be. 361 00:36:41,155 --> 00:36:42,889 I think there's definitely a sense on the internet 362 00:36:42,891 --> 00:36:48,363 that he is the first member of the internet kind of generation to become president. 363 00:36:51,565 --> 00:36:58,840 Omar : What's impossible to capture is just how hard this is day in day out. 364 00:37:02,878 --> 00:37:09,715 It's hard to like go on Facebook and see friends having kids, raising kids. 365 00:37:09,717 --> 00:37:14,856 I just feel like our lives are frozen in this kind of sickness amber. 366 00:37:24,498 --> 00:37:27,666 I can't be anybody's mom like this. 367 00:37:27,668 --> 00:37:32,539 I can't be anybody's wife like this. I don't feel like I'm a person. 368 00:37:32,541 --> 00:37:36,943 I haven't showered in forever and my hair... 369 00:37:36,945 --> 00:37:42,081 I'm nothing. I can't give you anything. 370 00:37:42,083 --> 00:37:43,883 You're my wife... 371 00:37:43,885 --> 00:37:46,920 I can't give you anything. 372 00:37:46,922 --> 00:37:50,559 ...and you bring joy into my life everyday. 373 00:37:55,230 --> 00:38:01,501 (ringing) 374 00:38:01,503 --> 00:38:02,571 Hello? 375 00:38:02,704 --> 00:38:04,637 Hi Jen. 376 00:38:04,639 --> 00:38:07,206 Is it super bright in there? Or how is the light for you? 377 00:38:07,208 --> 00:38:11,245 I usually keep it really dark in here but it's okay. 378 00:38:13,248 --> 00:38:18,550 Daddy, daddy. 379 00:38:18,552 --> 00:38:23,923 Leeray Denton : Before I got sick we just lived, you know, husband and wife. 380 00:38:23,925 --> 00:38:29,231 The wife had dinner ready when the husband came home and the house clean and... 381 00:38:31,565 --> 00:38:38,170 When you first got sick what did your husband think of all this as it was happening? 382 00:38:38,172 --> 00:38:46,580 I saw ten to twelve doctors that told me there was nothing wrong with me. 383 00:38:46,780 --> 00:38:54,188 I think that's maybe when Randy started doubting a little bit about how sick I was. 384 00:38:54,889 --> 00:38:58,192 Oh, you guys. 385 00:38:59,693 --> 00:39:04,599 And all of my husband's family, they just immediately jumped on that. 386 00:39:04,900 --> 00:39:12,671 "Oh, it's something mental. If the doctors can't find something, it must just be in her head." 387 00:39:12,673 --> 00:39:14,208 It's a gun? 388 00:39:14,643 --> 00:39:19,347 Ruger, seven and a half inches. Man. Wow! 389 00:39:21,682 --> 00:39:24,217 Leeray : We were married for fourteen years 390 00:39:24,219 --> 00:39:28,255 and I kind of feel like that's about as much as he could take. 391 00:39:39,634 --> 00:39:43,739 It was really scary when he left. 392 00:39:45,606 --> 00:39:55,117 I was worried about how I was going to cope with everything. How I was going to do everything. 393 00:39:58,320 --> 00:40:02,324 I had some struggles with my faith. 394 00:40:06,628 --> 00:40:11,033 I just felt so alone. 395 00:40:17,706 --> 00:40:23,245 I honestly don't have any friends now. They're gone. 396 00:40:30,751 --> 00:40:34,456 The only people that never questioned me were my children. 397 00:40:45,099 --> 00:40:47,701 Hi Jessica! 398 00:40:49,503 --> 00:40:55,710 I remember Jessica before she had gone to school she would clean the house and vacuum and do all this stuff for me. 399 00:40:57,244 --> 00:41:04,485 So they just kind of took over when he left. They just jumped in there for me. 400 00:41:06,021 --> 00:41:14,729 I missed graduations, I missed ball games. I missed things that mothers don't miss. 401 00:41:15,096 --> 00:41:21,369 But I was with my girls more than anybody I know was with their kids. 402 00:41:21,802 --> 00:41:23,269 Did you see my back bends? 403 00:41:23,271 --> 00:41:24,269 Yes. 404 00:41:24,271 --> 00:41:25,771 Aren't you proud of me? 405 00:41:25,773 --> 00:41:28,876 Yeah, I'm real proud of you! 406 00:41:30,277 --> 00:41:34,415 You know they would come in my room and sit and we'd talk for hours. 407 00:41:38,318 --> 00:41:44,226 That's the most important thing about being a mom is when your kids need you you're there for them. 408 00:41:46,927 --> 00:41:49,862 Go, Casie, go! Go, go, go! 409 00:41:49,864 --> 00:41:54,269 I thought the worst day of my life was when I got diagnosed but it wasn't. 410 00:41:55,302 --> 00:41:57,905 It was when Casie got diagnosed. 411 00:41:59,873 --> 00:42:05,179 That was the worst day of my life. 412 00:42:15,023 --> 00:42:16,623 Casie : I was in denial at first. 413 00:42:16,625 --> 00:42:22,264 I didn't want to think that was even a possibility for me to get what she had. 414 00:42:23,398 --> 00:42:31,173 Probably a good six to seven months after I had been very, very ill I found a neurologist. 415 00:42:31,806 --> 00:42:35,074 And he said, "Well I have good news and bad news." 416 00:42:35,076 --> 00:42:38,914 “The good news is I figured out what you have and it's Chronic Fatigue Syndrome. 417 00:42:39,146 --> 00:42:44,182 "The bad news is there's nothing we can do and you're going to have to go home and wait it out." 418 00:42:44,184 --> 00:42:45,318 “Wait for a cure." 419 00:42:45,320 --> 00:42:47,887 The bubbles swimming in the... 420 00:42:47,889 --> 00:42:50,759 Bubbles. Very good. 421 00:42:50,891 --> 00:42:53,159 Bobbing. Very good. 422 00:42:53,161 --> 00:42:57,798 Annabelle's asked me before, "why are you and Grandma both sick?" 423 00:42:57,898 --> 00:43:02,934 and "what does that mean? Am I gonna get sick?" 424 00:43:02,936 --> 00:43:08,609 I don't think she's scared necessarily but she's definitely asked questions and I don't really have answers. 425 00:43:13,347 --> 00:43:18,820 My dad did not believe my mom was sick he says up until I got sick 426 00:43:19,954 --> 00:43:28,193 but when I got sick I guess it just jolted him into believing wait a second this is real. 427 00:43:28,195 --> 00:43:31,565 Grandma says Hi Annabelle! 428 00:43:32,099 --> 00:43:37,672 I think Casie deals with this disease like she does because she saw how I dealt with it. 429 00:43:38,405 --> 00:43:41,342 And it didn't stop me from being mom. 430 00:43:41,409 --> 00:43:44,913 Can you see? My arms are getting tired. Can you still see it? 431 00:43:46,914 --> 00:43:50,818 Having kids with this would be the hardest thing you ever do 432 00:43:51,085 --> 00:43:55,724 and it would be the best thing that you'd ever do. 433 00:43:56,023 --> 00:43:57,726 You'd be a great mom. 434 00:43:59,494 --> 00:44:03,530 You'd be a great mom. 435 00:44:22,016 --> 00:44:23,950 (chirps) 436 00:44:23,952 --> 00:44:26,354 You're like an hour old. 437 00:44:29,157 --> 00:44:37,731 Jennifer : I was starting to see that maybe we didn't have to let go of everything we'd hoped for and wanted. 438 00:44:38,233 --> 00:44:41,736 But I still had so many basic questions. 439 00:44:43,403 --> 00:44:46,907 If we had kids, would it be safe? 440 00:44:47,275 --> 00:44:51,546 Could my son or daughter get what I have? 441 00:44:55,115 --> 00:45:00,688 And I didn't know why so many doctors couldn't answer these basic questions. 442 00:45:02,190 --> 00:45:06,157 Doctors want to know what to do but it's not in the textbooks of medicine. 443 00:45:06,159 --> 00:45:07,358 'What're we supposed to do?' You know 444 00:45:07,360 --> 00:45:11,398 so they have to go the same place you go and google it. 445 00:45:13,034 --> 00:45:17,603 In the United States we're still graduating class after class of medical students 446 00:45:17,605 --> 00:45:22,641 that haven't even heard of this illness and where to even look for its diagnostic criteria. 447 00:45:22,643 --> 00:45:26,646 The name, this Chronic Fatigue Syndrome name, has been part of it. 448 00:45:26,648 --> 00:45:30,048 And let me be a feminist for a moment being a woman is part of it. 449 00:45:30,050 --> 00:45:34,253 Eighty-five percent of the people with this illness are female. 450 00:45:34,255 --> 00:45:40,829 - (heartbeats) - ♪ (foreboding cello piece begins) 451 00:45:41,329 --> 00:45:44,262 Hysteria. 452 00:45:44,264 --> 00:45:48,068 It's an idea as old as written history. 453 00:45:50,338 --> 00:45:54,673 The Egyptians thought it was caused by a wandering womb. 454 00:45:54,675 --> 00:45:58,413 The Greeks blamed sexual deprivation. 455 00:45:58,679 --> 00:46:02,347 Sigmund Freud? Repressed memories. 456 00:46:02,349 --> 00:46:09,655 Some lessons of childhood can become the source of illness which has no discoverable basis in physical condition. 457 00:46:09,657 --> 00:46:15,764 Today what we'd like to do is to demonstrate the mechanism known as conversion reaction. 458 00:46:16,063 --> 00:46:21,603 Our patient is a young woman, she had some rather puzzling symptoms. 459 00:46:23,003 --> 00:46:28,606 We now call hysteria “functional disorder” or “conversion disorder,” 460 00:46:28,608 --> 00:46:33,480 which is what I was originally diagnosed with. 461 00:46:37,284 --> 00:46:43,488 I hear from women all of the time who were later diagnosed with fibromyalgia, 462 00:46:43,490 --> 00:46:49,996 lyme disease, lupus, who were initially told they were hypochondriacs. 463 00:46:49,998 --> 00:46:55,036 80% of autoimmune disease patients are women. 464 00:46:55,235 --> 00:46:59,037 I can't help but wonder if that's why we're disbelieved. 465 00:46:59,039 --> 00:47:02,641 Feelings of more than usual tiredness, nervousness, and discomfort 466 00:47:02,643 --> 00:47:08,449 it suggests emotional difficulties which the patient herself does not understand. 467 00:47:09,516 --> 00:47:15,320 The problem with psychosomatic diagnoses is that they can never be proven. 468 00:47:15,322 --> 00:47:22,496 They are names we give to illnesses when we can't find a biological cause but that doesn't mean there isn't one. 469 00:47:22,663 --> 00:47:25,597 The patient, as you can see, is a rather dependent girl. 470 00:47:25,599 --> 00:47:32,473 A girl who under many circumstances cannot admit to angry feelings. 471 00:47:33,173 --> 00:47:39,614 This is the story we tell until doctors can see our disease from the outside. 472 00:47:40,414 --> 00:47:47,922 MS was called hysterical paralysis right up to the day they invented a CAT scan machine. 473 00:47:48,523 --> 00:47:54,626 Because now we had the capacity to look at the brain and see those great big white spots of demyelination. 474 00:47:54,628 --> 00:47:57,496 So it went from hysterical to real. 475 00:47:57,498 --> 00:47:59,764 ♪ (cello and heartbeat music continues) 476 00:47:59,766 --> 00:48:04,239 Jennifer : We used to institutionalize women with hysteria. 477 00:48:09,277 --> 00:48:14,447 It's always tempting to look at the past as something strange and distant, 478 00:48:14,449 --> 00:48:18,052 to say “thank god we know better now.” 479 00:48:22,590 --> 00:48:30,865 But what I could never have imagined, had I not gotten this disease, is that we're still doing this. 480 00:48:33,300 --> 00:48:36,036 ♪♪ 481 00:51:03,284 --> 00:51:12,794 In Denmark the health authorities do not recognize ME as a physical disease. 482 00:51:13,360 --> 00:51:17,130 They say it is a psychiatric disease. 483 00:53:16,650 --> 00:53:22,019 Karina is only being seen by the psychiatric doctors that took her away from her parents. 484 00:53:22,021 --> 00:53:25,858 She's not been allowed to be seen by any other doctors. 485 00:53:25,860 --> 00:53:28,528 That's where the fight really started. 486 00:53:28,929 --> 00:53:33,201 Jennifer : When I first heard of this story I could hardly believe it. 487 00:53:34,068 --> 00:53:41,874 But I learned that in many countries doctors have been removing severe patients from their homes for decades. 488 00:53:41,876 --> 00:53:44,476 This is their general idea: 489 00:53:44,478 --> 00:53:48,548 your symptoms are being caused by false beliefs you have about your illness. 490 00:53:49,583 --> 00:53:54,485 Your parents indulge these beliefs, and this has kept you sick. 491 00:53:54,487 --> 00:54:00,193 So removing you from their influence is the only way you can get better. 492 00:54:02,061 --> 00:54:05,498 Do you know what you were accused of? 493 00:55:56,744 --> 00:56:03,584 Maybe it's harder to see the harm when it's caused by good intentions. 494 00:56:10,324 --> 00:56:16,731 When my neurologist diagnosed me, he said my symptoms were caused by a distant trauma. 495 00:56:16,931 --> 00:56:21,135 One I might not even remember. 496 00:56:27,608 --> 00:56:36,317 So I walked home in spite of the pain in my legs, the burning in my brain. 497 00:56:39,320 --> 00:56:49,463 My body was screaming but I ignored it because he told me, 'this has no biological cause.' 498 00:56:53,867 --> 00:56:57,071 As soon as I walked through the door I collapsed. 499 00:56:58,606 --> 00:57:03,444 That was the last time I ever walked that far. 500 00:57:08,849 --> 00:57:11,749 I used to be angry 501 00:57:11,751 --> 00:57:14,853 maybe I still am 502 00:57:14,855 --> 00:57:19,226 but I believe my doctor wanted to help. 503 00:57:19,693 --> 00:57:25,599 When medicine has no answers for you, where do you turn? 504 00:57:25,733 --> 00:57:30,668 I have the cure to mother-freaking-chronic fatigue. 505 00:57:30,670 --> 00:57:32,170 ♪ 506 00:57:32,172 --> 00:57:36,141 I cured my Chronic Fatigue with a high carb vegan diet in three days. 507 00:57:36,143 --> 00:57:38,309 Started eating the good foods, the whole foods. 508 00:57:38,311 --> 00:57:41,146 Balance your chemistry, acid alkaline balance. 509 00:57:41,148 --> 00:57:45,219 Two dietary supplements uh that can really really help. 510 00:57:50,356 --> 00:57:53,594 It's like a space alien. 511 00:57:55,695 --> 00:57:57,862 The lightning process changed my life. 512 00:57:57,864 --> 00:58:00,331 I've been tapping a lot. 513 00:58:00,333 --> 00:58:03,236 I take magnesium every day. 514 00:58:08,007 --> 00:58:12,711 I don't really know what's going on but something I'm taking it feels like it's working. 515 00:58:12,713 --> 00:58:16,851 Of course I would never know what is was I just had five new things in. 516 00:58:16,949 --> 00:58:19,717 Oh, delicious gastro intestinal support. 517 00:58:19,719 --> 00:58:21,422 Jennifer : Yes! 518 00:58:22,856 --> 00:58:30,362 I feel like I'm Betty Flintstone, you know? Like this is some crazy prehistoric dinosaur food. 519 00:58:30,364 --> 00:58:33,166 Whoa! 520 00:58:35,436 --> 00:58:39,737 Though my husband is sort of thinking a little bit about 521 00:58:39,739 --> 00:58:45,711 fecal transplants and up self administered hookworm, 522 00:58:45,713 --> 00:58:55,756 I think even I have certain lines that I at least at this point in time am not quite ready to cross. 523 00:59:01,228 --> 00:59:05,932 It's like the craziest high school science experiment you've ever done. 524 00:59:06,099 --> 00:59:14,972 It's just technical enough to feel like, wow I'm doing something kind of novel and scientific. 525 00:59:14,974 --> 00:59:23,349 So, the goal is to basically stun the worms and they drop out of your gut. 526 00:59:29,255 --> 00:59:34,358 A few months ago I started avoiding really small amounts of toxic mold 527 00:59:34,360 --> 00:59:36,994 and since then my exercise intolerance has disappeared. 528 00:59:36,996 --> 00:59:40,264 I'm trying to avoid mold at all costs. 529 00:59:40,266 --> 00:59:45,239 There is quite a bit of evidence of toxicity of mold. 530 00:59:45,371 --> 00:59:49,874 I started hearing from more and more people who were seeing huge improvements 531 00:59:49,876 --> 00:59:54,847 by leaving their homes and going to drier climates. 532 01:00:04,257 --> 01:00:10,362 Omar : Will strategically reducing my mold exposure make me a better lover? 533 01:00:10,364 --> 01:00:13,300 Are you okay with this? 534 01:00:14,001 --> 01:00:15,700 I'm okay with this. 535 01:00:15,702 --> 01:00:19,137 But you think it's gotten a little crazy. This is you letting off a little steam. 536 01:00:19,139 --> 01:00:24,909 There's no way to approach this except as crazy 537 01:00:24,911 --> 01:00:31,818 but just because it's crazy doesn't mean it's wrong... but there's no doubt that it's crazy. 538 01:00:33,387 --> 01:00:36,257 I know. 539 01:00:37,990 --> 01:00:39,990 - Jennifer : Love, I'm walking! - Omar : Yeah. 540 01:00:39,992 --> 01:00:47,300 - On the path! - Omar : Yeah. - Like, just 'cause... it's... 541 01:00:49,202 --> 01:00:50,871 Easy trigger. 542 01:00:52,271 --> 01:00:55,476 You gotta come back up that. Don't... don't 543 01:01:21,134 --> 01:01:23,670 Omar : What can I do? 544 01:01:23,903 --> 01:01:25,838 Outside. 545 01:01:33,380 --> 01:01:35,579 Feeling better? 546 01:01:35,581 --> 01:01:39,251 A little. I know this seems really hard and I mean it is but like 547 01:01:39,253 --> 01:01:41,952 just think of the gift that we live here and that there's space. 548 01:01:41,954 --> 01:01:45,055 How is that a gift if it makes you sick? 549 01:01:45,057 --> 01:01:47,559 You know it doesn't just touch clothes, it doesn't just touch the car, 550 01:01:47,561 --> 01:01:51,229 it doesn't just touch the house, it doesn't just touch like where we live. 551 01:01:51,231 --> 01:01:56,737 Like it potentially touches every aspect of our lives and that's scary to me. 552 01:01:56,936 --> 01:02:04,411 If you could have the signals that I have for like an hour, I feel like everything would change. 553 01:02:04,677 --> 01:02:14,184 Right, and conversely, if you lived with this total absence of these signals you would feel insane 554 01:02:14,186 --> 01:02:21,025 every time you are making some great adjustment in your life for something that is... 555 01:02:21,027 --> 01:02:25,398 You can't see or touch or taste or experience. Totally invisible. 556 01:02:46,452 --> 01:02:48,485 Definitely do not go inside. 557 01:02:48,487 --> 01:02:49,119 Okay, you see... 558 01:02:49,121 --> 01:02:51,824 Or get too close honestly. 559 01:02:52,559 --> 01:02:55,626 That's an impossible request to not get too close to it. 560 01:02:55,628 --> 01:02:58,496 Well I mean I'm saying you could like be wearing mold free clothes when you're around the tent. 561 01:02:58,498 --> 01:03:00,298 Why don't I take off all my clothes? 562 01:03:00,300 --> 01:03:05,072 - Yeah, do that! - So there's a hook. There's a hook here. - I'm trying to be serious, love. 563 01:03:06,072 --> 01:03:10,275 And I'm trying to be serious. There's no way for me to not touch the tent and assemble the tent. 564 01:03:10,277 --> 01:03:13,345 I think what I'm trying to say is that I realize being in mold free clothes 565 01:03:13,347 --> 01:03:18,619 is probably better for interacting with our home. 566 01:03:20,253 --> 01:03:22,619 Would you mind changing? 567 01:03:22,621 --> 01:03:27,025 Into what? Like these were mold free. You sniffed these. These were mold free. 568 01:03:27,027 --> 01:03:28,961 Yeah, but you went inside the house. 569 01:03:30,597 --> 01:03:33,130 I don't want you to change into mold free clothes. 570 01:03:33,132 --> 01:03:35,499 I wanted you to change to clothes you can wear in the house. 571 01:03:35,501 --> 01:03:40,637 I cannot change clothes every time I walk in and outside the house. That is, that is... 572 01:03:40,639 --> 01:03:44,108 In our new house or my new house at least 573 01:03:44,110 --> 01:03:47,746 you have to be very careful otherwise you have to buy this tent and do it all over again which is kind of silly. 574 01:03:47,748 --> 01:03:49,447 What do you want me to do right now? 575 01:03:49,449 --> 01:03:53,117 I think you should probably shower and put on new clothes. 576 01:03:53,119 --> 01:03:57,722 Okay. Well then you're on your own for now. 577 01:03:57,724 --> 01:04:00,258 I really don't make the rules. 578 01:04:00,260 --> 01:04:03,494 You have to appreciate it feels insane. 579 01:04:03,496 --> 01:04:06,798 Like I changed my clothes an hour ago. Now I'm changing them again. 580 01:04:06,800 --> 01:04:11,171 It's a little maddening. I'll just avoid you like I'm the plague. 581 01:04:34,827 --> 01:04:40,967 I used to think if I looked hard enough I was going to find a cure 582 01:04:41,233 --> 01:04:44,568 and I have found a lot of things that have helped. 583 01:04:44,570 --> 01:04:50,009 The antivirals, mold avoidance, even some of the supplements; 584 01:04:50,242 --> 01:04:53,510 but I'm not going to figure this out on my own. 585 01:04:53,512 --> 01:04:59,652 Inside every cell there's there's your energy making machine. It's called the mitochondria. 586 01:05:00,119 --> 01:05:05,722 So in this illness, each individual cell can have real problems capturing the 587 01:05:05,724 --> 01:05:10,963 things they need that your body uses to make energy like oxygen and glucose. 588 01:05:11,130 --> 01:05:16,202 At a cellular level you become less and less effective like a wound down clock. 589 01:05:18,838 --> 01:05:23,210 Jennifer : If our neurons don't have enough energy we can't think. 590 01:05:23,809 --> 01:05:28,648 If our immune cells don't have enough energy we can't fight viruses. 591 01:05:29,548 --> 01:05:33,753 And if our muscles don't have enough energy we can't move. 592 01:05:35,489 --> 01:05:41,929 But where you can really see it is when we crash after physical or mental exertion. 593 01:05:43,396 --> 01:05:46,900 Our cells give out and all of our symptoms flare. 594 01:05:49,369 --> 01:05:54,875 Dr. Klimas's team can actually track this crash point on a metabolic level. 595 01:05:55,307 --> 01:05:57,108 Dr. Klimas : There's two different kinds of energy. 596 01:05:57,110 --> 01:06:02,713 There's aerobic energy and there's anaerobic energy that you get from the cell itself. 597 01:06:02,715 --> 01:06:08,418 We teach people how to stay in that tiny little space of aerobic. And it is little. 598 01:06:08,420 --> 01:06:11,958 Sometimes it's two minutes, sometimes it's three minutes of effort. 599 01:06:12,659 --> 01:06:16,630 You can safely operate in this space without crashing. 600 01:06:19,231 --> 01:06:23,534 The minute that you go into the anaerobic space and you ask the cells to make energy 601 01:06:23,536 --> 01:06:26,939 you're in big trouble because you don't have it. 602 01:06:27,507 --> 01:06:32,913 Jennifer : I think this is half the reason this disease is so hard to understand. 603 01:06:34,780 --> 01:06:42,154 Why someone like me can be walking one moment and look completely normal 604 01:06:43,523 --> 01:06:47,327 and then a few hours later crash in bed for days. 605 01:06:49,695 --> 01:06:54,300 I feel like I'm this broken battery that's stuck at 10%. 606 01:06:55,802 --> 01:07:02,009 And when we crash, we disappear, so you never see us at our worst. 607 01:07:04,577 --> 01:07:10,280 I was amazed to find out how many questions we've never really asked. 608 01:07:10,282 --> 01:07:13,185 Why do more women get it? 609 01:07:13,420 --> 01:07:15,853 Is it genetic? 610 01:07:15,855 --> 01:07:22,028 And why thirty years into it are we still no closer to a cure? 611 01:07:39,411 --> 01:07:41,912 Hey, how are you doing? 612 01:07:41,914 --> 01:07:49,255 Oh, good. This is kind of amazing type of interview. Yeah. 613 01:07:49,322 --> 01:07:52,590 You've spent your life tackling really hard problems. 614 01:07:52,592 --> 01:07:57,695 Why has it been so hard to figure out what's going on in patients like me? 615 01:07:57,697 --> 01:08:01,833 What's usually hard about a problem is that you often have to take 616 01:08:01,835 --> 01:08:05,972 a very different perspective than what is conventional. 617 01:08:06,572 --> 01:08:10,641 I look on trying to figure out if CFS as one of the most difficult things 618 01:08:10,643 --> 01:08:12,745 I've ever tried to tackle. 619 01:08:14,514 --> 01:08:18,950 CFS is an extremely complicated disease involving the immune system 620 01:08:18,952 --> 01:08:22,456 and the brain and who knows what else. 621 01:08:23,390 --> 01:08:25,889 We're studying a very small population of severely ill patients 622 01:08:25,891 --> 01:08:31,097 and we're collecting billions of data points on each patient. 623 01:08:31,930 --> 01:08:35,400 We're probably collecting more data on an individual 624 01:08:35,402 --> 01:08:38,105 than has ever been collected for any disease in history. 625 01:08:40,606 --> 01:08:46,313 I've teamed up with really superb scientists. Three of them have a Nobel Prize. 626 01:08:46,779 --> 01:08:50,580 In two/three months we'll have some data to sit at the table and look at... not publish... 627 01:08:50,582 --> 01:08:54,220 just you know some of the data to look at. That would be real. 628 01:08:54,453 --> 01:08:58,055 Almost exclusively the organization that funds medical research 629 01:08:58,057 --> 01:09:00,758 is the National Institutes of Health. 630 01:09:00,760 --> 01:09:06,800 Chronic Fatigue Syndrome is the lowest funded of any major disease by a lot. 631 01:09:09,836 --> 01:09:16,040 Many of the people that are at NIH and have in the past not believed it's real. 632 01:09:16,042 --> 01:09:19,412 So why would you fund something that's not real? 633 01:09:20,479 --> 01:09:24,350 I've written two applications to the National Institutes of Health. 634 01:09:24,417 --> 01:09:27,617 Both of them were turned down without review. 635 01:09:27,619 --> 01:09:31,022 We have to attempt every door at NIH. 636 01:09:31,024 --> 01:09:36,863 If we get shut out from every door then the only recourse we have is go to Congress. 637 01:09:50,510 --> 01:09:56,016 This is what's called TPN: total peripheral nutrition. 638 01:09:56,615 --> 01:10:00,287 And that's all he gets for food. 639 01:10:02,421 --> 01:10:06,125 The speech center gets affected. 640 01:10:07,127 --> 01:10:11,031 It's probably been a year since he's talked. 641 01:10:29,082 --> 01:10:33,320 He loved traveling and taking photographs. 642 01:10:34,087 --> 01:10:39,860 One day he asked us to take his camera out of his room. 643 01:10:39,926 --> 01:10:46,496 And then he motioned for me to let him hold it for a minute. 644 01:10:46,498 --> 01:10:55,242 And he just hugged his camera and then told it goodbye and I took it out of the room. 645 01:11:08,621 --> 01:11:12,055 He was my best friend. 646 01:11:12,057 --> 01:11:16,630 It's hard to find somebody that knows you like your sibling does when you're close like that. 647 01:11:22,469 --> 01:11:26,206 ♪ (Doo-wop) 648 01:11:30,909 --> 01:11:35,148 Janet : March 26th, 1990. 649 01:11:46,993 --> 01:11:49,462 ♪♪ 650 01:12:17,256 --> 01:12:20,758 I got to try to rewrite this grant and put it in again. 651 01:12:20,760 --> 01:12:23,894 Janet : I just found myself getting pissed off. 652 01:12:23,896 --> 01:12:29,767 All these people are clamoring for funding and they tell you no for the stupidest reasons. 653 01:12:29,769 --> 01:12:34,604 I think they'll come around. I just worry how long it's going to take to come around. 654 01:12:34,606 --> 01:12:39,544 Janet : Well maybe we should tell them we'd like them to come around before our son is dead. 655 01:12:39,546 --> 01:12:42,481 Yes. 656 01:12:46,618 --> 01:12:49,986 Ron : I'm working against the clock. 657 01:12:49,988 --> 01:12:52,759 How much time does he have? 658 01:12:54,461 --> 01:12:59,498 Will it get to the point where some of his organs start shutting down or something like that? I worry about that. 659 01:13:05,104 --> 01:13:10,476 Janet : Sometimes I just dream that that door opens and he walks out the door. 660 01:13:11,344 --> 01:13:16,947 One of the highest death rate from CFS is suicide, 661 01:13:16,949 --> 01:13:23,555 which really really scares me because I don't want him gone before they figure out a way to help him. 662 01:13:31,096 --> 01:13:39,038 I can't do it for much longer. 663 01:13:39,671 --> 01:13:42,174 I don't... 664 01:13:45,979 --> 01:13:49,082 It's like I'm just watching my life disappear. 665 01:13:50,315 --> 01:13:55,822 I'm watching everybody else grow up and do all the things that people do when they grow up. 666 01:13:56,322 --> 01:14:02,662 I just spend all my life in fucking... in a house watching the world just pass. 667 01:14:42,201 --> 01:14:45,572 Jennifer : We've lost so many people. 668 01:14:47,873 --> 01:14:54,847 I hear stories of other children ripped from their home by police. 669 01:15:01,319 --> 01:15:05,724 I've lost friends to suicide. 670 01:15:07,894 --> 01:15:13,766 I've had friends who were doing okay and then just got worse. 671 01:15:16,903 --> 01:15:21,740 Sickness doesn't terrify me and death doesn't terrify me. 672 01:15:23,876 --> 01:15:32,152 What terrifies me is that you can disappear because someone's telling the wrong story about you. 673 01:15:33,319 --> 01:15:39,459 I feel like that's what's happened to all of us who are living this. 674 01:15:44,063 --> 01:15:53,573 And I remember thinking, there's no one coming to look for me because no one even knows that I went missing. 675 01:15:57,844 --> 01:16:01,847 ♪ (soft piano) 676 01:16:03,483 --> 01:16:06,383 All of those things... 677 01:16:06,385 --> 01:16:15,728 Those things, those really simple things. 678 01:16:20,899 --> 01:16:29,308 Not realizing how fragile they were because you never do. 679 01:16:30,109 --> 01:16:33,813 You never do. 680 01:16:39,819 --> 01:16:42,922 That life was gone. 681 01:16:45,858 --> 01:16:49,262 But here I had this new one. 682 01:16:51,863 --> 01:16:54,000 And I had to fight for it. 683 01:16:55,001 --> 01:16:58,568 Hello everyone, welcome! I think we'll probably have more 684 01:16:58,570 --> 01:17:00,804 people joining us um in then next minute or two. 685 01:17:00,806 --> 01:17:05,009 I'm fromthe Netherlands. I'm here with Annette, I think? 686 01:17:05,011 --> 01:17:07,410 Hi, Sebastian, I'm from Hamburg. 687 01:17:07,412 --> 01:17:11,014 In South Africa we're very much behind. 688 01:17:11,016 --> 01:17:14,317 The doctor's really have zero clues, you know, they don't know anything yet. 689 01:17:14,319 --> 01:17:19,423 We're kind of both organizing a day of protest as well as organizing individual protests. 690 01:17:19,425 --> 01:17:23,829 People obviously are going to find it very hard to get to this protest. 691 01:17:24,063 --> 01:17:27,865 I'm not somebody who's ever done protests before. I have no energy to do one. 692 01:17:27,867 --> 01:17:33,036 You can still be out there in... especially if you've got a wheelchair that reclines 693 01:17:33,038 --> 01:17:35,641 but also in a lawn chair... 694 01:17:36,108 --> 01:17:44,016 Jennifer : The only way anything is ever going to change is if people can see us. 695 01:20:02,354 --> 01:20:10,128 (Ren Gill singing "Patience") 696 01:20:22,207 --> 01:20:27,611 ♪ It's alright, it's ok, I'm feeling brave gonna face this day ♪ 697 01:20:27,613 --> 01:20:33,384 ♪ It's ok, it's alright no tears will kiss my cheeks tonight ♪ 698 01:20:33,386 --> 01:20:38,755 ♪ It's all good, and I'm just fine my words ring out like hollow shells ♪ 699 01:20:38,757 --> 01:20:44,727 ♪ Should slow down, it takes time but time moves slow I know this well ♪ 700 01:20:44,729 --> 01:20:49,734 ♪ And my heart breaks one thousand times a day ♪ 701 01:20:50,168 --> 01:20:54,204 ♪ But for every hope that dies another one takes its place ♪ 702 01:20:54,206 --> 01:21:01,044 ♪ Because I have the strength of a mountain I've got the courage of the deep blue sea ♪ 703 01:21:01,046 --> 01:21:07,317 ♪ And I have the heart of a lion and the stars burn bright inside of me ♪ 704 01:21:07,319 --> 01:21:15,526 ♪ And although you test me my God I stand so proudly can't you see that I have the strength of a mountain ♪ 705 01:21:15,528 --> 01:21:19,062 ♪ And I'll take all you throw at me ♪ 706 01:21:19,064 --> 01:21:23,700 I'm here on behalf of my son Gordon who is 22. 707 01:21:23,702 --> 01:21:27,303 He's been sick since he was twelve. 708 01:21:27,305 --> 01:21:32,511 We're live in Dallas, Texas for Millions Missing for ME CFS. 709 01:21:34,680 --> 01:21:41,818 We're on our way to Millions Missing protest in Lansing. We stayed at the hotel last night. 710 01:21:41,820 --> 01:21:46,259 Hey everybody! We're here in Melbourne, Australia... 711 01:21:53,532 --> 01:22:01,104 If our governments across the world today do not see us, do not take action on this crisis, 712 01:22:01,106 --> 01:22:05,278 then this pattern is due to repeat itself. 713 01:22:06,479 --> 01:22:12,348 ♪ I have the strength of a mountain I've got the courage of the deep blue sea ♪ 714 01:22:12,350 --> 01:22:18,354 ♪ I have the heart of a lion and the stars they burn bright inside of me ♪ 715 01:22:18,356 --> 01:22:24,628 ♪ And although you test me my God I stand so proudly can't you see ♪ 716 01:22:24,630 --> 01:22:31,604 ♪ I have the strength of a mountain and I'll take all you throw at me ♪♪ 717 01:22:47,886 --> 01:22:54,693 Omar : Every time you do something you love I know you're going to end up paying for it. 718 01:22:56,261 --> 01:22:58,728 All : Thank you! 719 01:22:58,730 --> 01:23:03,567 Omar : But I also know that's what makes you feel alive. 720 01:23:03,569 --> 01:23:06,739 Bye! Nice to see you all! 721 01:23:08,673 --> 01:23:14,178 I know you keep saying not to think of it like this but I just feel like I'm like robbing you 722 01:23:14,180 --> 01:23:23,187 and I'm hurting you and I think that's just really hard and... 723 01:23:23,189 --> 01:23:29,195 Omar : All I can tell you, love, is I am so grateful that you are in my life. 724 01:23:29,261 --> 01:23:38,771 You know if I can talk to you? If I can like hold you tight? I'm good. 725 01:24:00,993 --> 01:24:04,628 Randy : I remember the first time I saw you, you were getting out of the car. 726 01:24:04,630 --> 01:24:08,397 - Your mom was in the car with you. - Leeray : Yeah. 727 01:24:08,399 --> 01:24:13,071 And I thought how cute you were. Wholesome. 728 01:24:14,840 --> 01:24:20,246 Leeray : Randy! Come help. Don't just record you sitting over there. 729 01:24:20,945 --> 01:24:25,348 Randy : When I left I honestly, honestly thought you would get better. 730 01:24:25,350 --> 01:24:31,222 I thought that at this point if I'm gone I'm not a crutch for her 731 01:24:31,623 --> 01:24:34,825 and she'll have to get better because she'll have to. 732 01:24:34,827 --> 01:24:39,830 I felt like if I took care of you guys financially that everything would work out for you guys 733 01:24:39,832 --> 01:24:40,863 and ya'll would wind up being happier. 734 01:24:40,865 --> 01:24:43,634 And I made choices that I regret. 735 01:24:43,636 --> 01:24:52,111 And uh I don't know if there's enough life left in me to make it up to you but I will try. 736 01:25:47,765 --> 01:25:50,935 Jessica : My ME goes up and down. 737 01:25:52,337 --> 01:25:55,840 I spend most days in bed. 738 01:25:59,444 --> 01:26:05,083 Life doesn't just stop because you've got severe ME. 739 01:26:12,725 --> 01:26:21,167 So even though I've been stuck in a room or my parameters are so small, I've still lived. 740 01:26:21,600 --> 01:26:22,833 Is it recording? 741 01:26:22,835 --> 01:26:30,576 Yep. Woo! 742 01:26:43,454 --> 01:26:48,825 Jennifer : Before I got sick, every book I read, every movie I saw said, 743 01:26:48,827 --> 01:26:55,134 "when you fall ill, either you will find the cure or die trying." 744 01:26:56,734 --> 01:26:59,971 It always ends in triumph or tragedy 745 01:27:00,972 --> 01:27:03,906 But that's not my story. 746 01:27:03,908 --> 01:27:07,246 At least not yet. 747 01:27:13,018 --> 01:27:16,018 - Jennifer can you hear me? - Yeah I can. 748 01:27:16,020 --> 01:27:22,094 Alright can you see a framing? Alright, I'm rolling. 749 01:27:26,965 --> 01:27:31,036 There's the sun. 750 01:27:38,644 --> 01:27:44,915 ♪ (quiet, striving symphony begins) 751 01:27:44,917 --> 01:27:49,588 And somehow it's almost as good as actually being there. 752 01:27:58,831 --> 01:28:02,568 This is so beautiful. 753 01:28:05,002 --> 01:28:08,139 This is incredible. I don't even... 754 01:28:27,926 --> 01:28:32,498 You have to be able to hold two things in your head. 755 01:28:34,666 --> 01:28:40,271 This illness destroyed my life. 756 01:28:42,940 --> 01:28:49,148 But what it showed me, I could never give that back. 757 01:29:03,628 --> 01:29:09,233 I want to be well. I want to wake up tomorrow and be well. 758 01:29:09,967 --> 01:29:16,240 And yet I am grateful for every inch of my life. 759 01:29:18,877 --> 01:29:26,016 I am still here. I am still here. 760 01:29:26,018 --> 01:29:31,556 (Lhasa de Sela sings “Love Came Here") 761 01:29:31,756 --> 01:29:42,000 ♪ There is no end to this story ♪ 762 01:29:43,702 --> 01:29:53,212 ♪ No final blow or glory ♪ 763 01:29:58,250 --> 01:30:07,760 ♪ Love came here and never left ♪ 764 01:30:10,862 --> 01:30:20,538 ♪ Now that my heart is open ♪ 765 01:30:23,274 --> 01:30:32,784 ♪ It can be closed or broken ♪ 766 01:30:36,822 --> 01:30:46,331 ♪ Love came here and never left ♪ 767 01:30:49,900 --> 01:30:59,411 ♪ Now I have to live with loving you forever ♪ 768 01:31:13,725 --> 01:31:17,429 What are you doing? 769 01:31:31,409 --> 01:31:36,409