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[strained breathing]
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[strained breathing continues]
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[thud]
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[sigh]
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[thud]
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>> Omar Wasow: Directions to Princeton Hospital
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>> GPS Service: Getting directions
to Princeton Animal Hospital.
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>> Omar: Directions to Princeton Hospital.
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>> GPS: Getting directions to Princeton Animal Hospital.
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>> Omar: Princeton Hospital.
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>> GPS: Here's Princeton Animal Hospital.
It's about two and a half miles south.
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>> Jennifer Brea: Can you ask one more time?
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>> Omar: Hospitals near Princeton.
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>> GPS: Searching for youth hostels and Inns.
15
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[machines beeping]
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What were you saying love?
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Just one has to be careful.
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If you say too little they can't help you and if you say too much
they think you're a kind of mental patient.
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>> Jennifer: From as early as I can remember
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I wanted to swallow the world whole.
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Dreaming about all the places I would go
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and the things I would see
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I thought if I dreamed hard enough
anything was possible
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A film by Jennifer Brea.
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Today we talked with a U.S. student
studying abroad in Beijing.
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>> Jennifer: Well I know some some of us
were kind of scared atually because...
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We are constantly telling ourselves a story
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about who we are
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and where we're going.
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For example
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that’s my husband, Omar.
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I met him when I was twenty-five.
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[people cheering and laughing]
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We were both at Harvard getting our PhDs
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Three months later I knew that I wanted to marry him.
36
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I meet Jen when she's visiting campus
and I'm like, "Wow who's that? She's really cute!" And-
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Really?
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Yeah and-
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but I've got no game, right?
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So the whole session I’m thinking like,
"How do I start a conversation with her?"
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And then at the end of the session
she comes over and talks to me.
42
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And I was like yes! And she says like,
"what is going on tonight?"
43
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and I was just like, "this never happens to me!
This never happens to me."
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>> Person filming: Omar holding the back of a kayak
flailing all over the place to try to get in.
45
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Hopefully this is just a kayaking trip, not a metaphor.
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>> Jennifer: I mean sure, we all know nothing lasts forever
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I just thought I would have more time.
48
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And then one day I got a fever
of a hundred and four point seven degrees.
49
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I got better but something wasn't right.
50
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I would go to the kitchen to get a glass of water
and then I wouldn't be able to move again.
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I don't know what I did to myself.
I don't think I can get up off the couch.
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[grunt]
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I know you might be saying to yourself
if I really couldn't stand up why would I be filming it? Well...
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I kind of think that someone should see this.
55
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That first year I had six infections.
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[whispering] Okay, turn off the light.
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I basically would get out of bed, go to class,
and then I was in bed again.[
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I’d go to the doctor and he would tell me,
"you're just dehydrated. Everyone gets stressed."
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So I don't know if this is going to happen at
the doctor's office or not but I...
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I figure it's good to just keep documenting.
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The right side of my face feels numb.
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I feel like my brain is misfiring.
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Sometimes I have these strange little moments where
like my hand will make a fist and I can't open it.
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Sometimes I wouldn't be able to speak,
I’d have no thoughts, no words.
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[making noises]
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I would be sensitive to light
and the slightest sound could cause excruciating pain.
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[loud whirl of fan]
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>> Omar: I'm gonna stop recording.
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>> Jennifer: No, don't.
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It’s fine.
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>> Omar: This is perhaps the least chivalrous thing
I've ever done in my life.
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Okay I'm gonna rest here for a minute.
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It happened all of a sudden. I don't know-
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it's like someone turned off the lights or something.
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[tense orchestral music builds]
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>> Jennifer: I saw every kind of specialist.
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Infectious disease doctors, endocrinologists,
cardiologists, and finally a neurologist.
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My neurologist diagnosed me with conversion disorder.
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He said that all of my symptoms, even the fever,
the infection for which I took antibiotics
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were being caused by some distant trauma
I might not even be able to remember.
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Either that or I was just really
stressed out about my final exams.
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[birds chirping]
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[water lapping]
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[wind rustling trees]
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[birds chirping]
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For the next several years I spent most of my time bedridden.
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I thought maybe I had a rare disease.
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Maybe I was dying.
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And then I went online and found thousands
of other people all over the world just like me.
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Yeah I'm completely bed ridden.
I have lost the ability to walk.
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I crawl from my bed to my bathroom and
I just think, "this s my life. What a shit hole!"
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It's the cognitive problems that are the most disabling.
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I live in a dark room twenty-four seven.
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I have ME/CFS.
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That's Chronic Fatigue Syndrome
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or Myalgic Encephalomyelitis
I think is the term that you're supposed to use now.
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I've have some kind of ME/CFS for about eight years now.
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I was ten years old when I first got sick.
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I was a really competitive skier.
100
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At one point I was ranked seventeenth
on the entire East Coast for mogul skiing.
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This is the couch.
These three cushions are where I spend my life.
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And out there that's that's all my old life.
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>> Larry King: The Chronic Fatigue Syndrome.
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It's been called the Yuppie Flu, Epstein Barr,
and a living hell by those who suffer from it.
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There's still no adequate medical explanation for it.
The experts say it could be triggered by viruses.
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We all get tired but is it Chronic Fatigue Syndrome?
Some believe that's a made up condition.
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You have Chronic Fatigue ME.
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You're in that percentage of people who are severely disabled.
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Based on your duration of illness you are still in that category
that we call in sort of the acute phase.
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And the CDC statistic's that if you've been sick five years you're
unlikely to recover. I agree with that statistic.
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People reach a plateau of function
that's better than they were at baseline
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but not that they have
a full recovery.
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[glasses clinking]
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I had no idea if it would be months
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or years
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or decades.
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It was like I had died, but was forced to watch
as the world moved on.
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[children playing in distance]
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If I completely disappear and I'm in this bed
and I can do nothing
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then it's like I don't even exist
or that I never existed.
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And then what was the point of it all?
Of being born in the first place?
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You know and honestly there are a lot of days
when I just feel like I'm doing a good job
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by just holding it together and not killing myself.
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Like I'm really proud of that.
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And it's not- I really don't want to die.
Like I really don't want to die.
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But at a certain point it's hard to call this living and...
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I think the grief of all those things
I might not do or see or have or...
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[moaning]
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[sighing]
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Yeah so it's sad.
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[ringing]
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Hey Jen.
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Hi.
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00:16:03,130 --> 00:16:06,633
Welcome to My World of One Room.
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I have been severely unwell for eight years.
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>> Jennifer: I found Jessica online.
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She was so young and had lost so much.
138
00:16:19,313 --> 00:16:22,107
Yet somehow, she found a way to keep going.
139
00:16:23,233 --> 00:16:25,736
So I asked if I could film her
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I mean, if we have to do it ten minutes at a time
over like many days, we'll get there.
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00:16:31,825 --> 00:16:32,409
Yeah.
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Happy birthday to you,
Happy birthday to you
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00:16:38,749 --> 00:16:43,670
Happy birthday dear Jessica,
Happy birthday to you
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[laughing]
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-Come on, come on.
[blowing ]
-Excellent.
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00:16:50,719 --> 00:16:55,974
>> Jessica: I get to my birthday and for me,
that's a really difficult date
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because I think it’s another year in bed.
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00:17:00,521 --> 00:17:02,898
I need your help.
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00:17:05,567 --> 00:17:08,737
[paper ripping]
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Too loud.
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00:17:18,997 --> 00:17:21,333
I remember my sixteenth birthday in bed.
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00:17:21,583 --> 00:17:28,298
I remember my seventeenth,
eighteenth, nineteenth, twentieth, twenty-first.
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Pretty. Look.
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I made it into a chair for a couple of seconds
for my twenty-second but other than that I was in bed.
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You need your injection, don't you.
156
00:17:41,728 --> 00:17:43,230
Injection mid-champagne.
157
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Mid-champagne.
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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?
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The everyday joy.
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[laughter]
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Happy birthday.
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00:18:00,956 --> 00:18:02,332
Happy birthday.
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00:18:04,376 --> 00:18:06,879
Have some champagne, dear.
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[slow piano music plays]
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>> Jessica: When I was fourteen I suffered
with a flu-like virus.
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I was sleeping all through school and I had the teacher
shouting at me saying, "Jessica! Pull your head off that table."
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I remained in hospital for four years constantly.
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I was in a semi-coma.
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The doctors had no idea what to do.
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The nurses were getting frustrated at me
for not getting better.
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They almost saw me as a lost cause.
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I’m very lucky to have a sister like you.
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You can’t do makeup. Open.
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That’ll do.
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I think it will.
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[laughter]
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When you were in that hospital
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and you couldn’t move or speak,
how did you stay sane?
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I stayed sane because I can do lots of things with my mind
180
00:19:53,026 --> 00:19:58,448
and I go to many different places
all over the world in my mind.
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00:19:59,658 --> 00:20:03,704
[seagulls cawing]
182
00:20:03,954 --> 00:20:12,045
I love Australia because I love the water
and I'd love to go scuba diving there.
183
00:20:19,803 --> 00:20:28,604
As I jump into the water and have that freedom
of my body moving but there being no sound.
184
00:20:32,316 --> 00:20:41,283
and a multitude of different colors of fish
calm you down and relax you.
185
00:20:45,579 --> 00:20:52,044
It becomes more and more magical
and still there's that silence.
186
00:20:54,463 --> 00:20:57,508
[zipper unzipping]
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00:20:57,841 --> 00:21:02,095
[straps tightening]
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00:21:03,680 --> 00:21:04,848
[grunting and laughing]
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00:21:05,098 --> 00:21:06,975
Awkward!
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00:21:11,688 --> 00:21:18,820
>> Jessica: I suffer with severe osteoporosis now
because I've been bedridden for so long with ME.
191
00:21:19,071 --> 00:21:22,282
So I have the bones of a hundred-year-old.
192
00:21:24,034 --> 00:21:31,333
I'm quite a tall girl. I've actually grown four inches
in the time I've been bedridden.
193
00:21:32,000 --> 00:21:36,088
So I've never actually stood up at this height.
194
00:21:38,632 --> 00:21:45,472
About a month ago I touched the floor for the first time.
195
00:21:47,391 --> 00:21:50,102
You alright? Feet on the ground?
196
00:21:50,477 --> 00:21:51,979
Feet on the ground.
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00:21:52,229 --> 00:21:54,273
[sighing]
198
00:21:55,107 --> 00:21:56,984
How's that?
199
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It's mental. Oh my goodness.
200
00:22:01,321 --> 00:22:04,324
When did you last do this?
201
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Not for about probably for eight years.
202
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Eight years.
203
00:22:14,459 --> 00:22:15,794
And you sat on the bed with Tom didn't you?
204
00:22:16,044 --> 00:22:19,381
Yeah but it didn't go like this.
205
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Stand on your feet.
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00:22:24,261 --> 00:22:26,889
[sharp breath]
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Sleepy? Okay, come down my girl.
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[rustling]
209
00:23:12,351 --> 00:23:13,852
-Hi!
-Hi, how's it going?
210
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New video is starting. There you are.
211
00:23:18,065 --> 00:23:22,945
I started filming more and more people
all over the world from my bed.
212
00:23:23,195 --> 00:23:25,531
Camera speeds!
213
00:23:28,575 --> 00:23:29,910
Who am I going to be looking at?
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00:23:30,160 --> 00:23:32,996
Oh you're looking at this camera right there.
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00:23:33,247 --> 00:23:35,290
[speaking foreign language]
216
00:23:35,541 --> 00:23:38,669
I found out that my disease isn't rare at all.
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00:23:38,919 --> 00:23:41,505
A million people in the US have it.
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[speaking Arabic]
219
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Seventeen million around the world.
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[speaking Spanish]
221
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That means it’s twice as common as multiple sclerosis.
222
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Like MS, it’s a spectrum disorder.
223
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I know people who can work and
you’d never know from looking at them that they were sick.
224
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Who can walk a mile, but have cognitive problems.
225
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A quarter of us are homebound or bedridden.
226
00:24:17,332 --> 00:24:20,419
Saw someone collecting the other day for ME.
227
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That's the one where "I don’t feel like
going to work today."
228
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[audience laughing]
229
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Chronic fatigue syndrome. Yeah, I'm tired too.
230
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[laughing]
231
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Jen? Jen?
232
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Okay, let's lay down.
233
00:24:42,858 --> 00:24:46,945
So Jen is calling in. Can you see?
234
00:24:49,865 --> 00:24:50,407
Jen?
235
00:24:51,533 --> 00:24:53,827
Hey! There you are. You look comfy.
236
00:24:54,077 --> 00:24:56,079
Nancy, one. Take one. Mark.
237
00:24:56,330 --> 00:24:57,039
[slate clapping]
238
00:24:57,915 --> 00:25:02,920
I'm Nancy Klimas. I'm a clinical Immunologist
which is the study of the immune systems.
239
00:25:03,170 --> 00:25:06,298
Clinical Immunology's a kind of a very small specialty.
240
00:25:06,548 --> 00:25:09,051
There aren't many people around
that do clinical immunology.
241
00:25:09,301 --> 00:25:12,804
I was one of a kind.
I was the only immunologist at my university.
242
00:25:15,641 --> 00:25:20,103
The year was '84,
that was the year HIV hit the scene big time.
243
00:25:21,438 --> 00:25:26,777
My practice was people without HIV
but people who didn't make antibody,
244
00:25:27,027 --> 00:25:28,737
people that were getting sick without explanation.
245
00:25:29,988 --> 00:25:34,993
A patient came in to see me and she had been brutalized
by the health care system.
246
00:25:35,244 --> 00:25:38,288
She was terribly ill, she was profoundly fatigued.
247
00:25:38,539 --> 00:25:41,333
She'd been put on antidepressants
without any depression.
248
00:25:41,583 --> 00:25:47,005
She'd been put on antipsychotics
without any mental illness whatsoever.
249
00:25:47,256 --> 00:25:48,757
It was like shocking.
250
00:25:49,007 --> 00:25:50,884
So I was listening to her.
She was just telling me this story.
251
00:25:51,134 --> 00:25:54,638
She says, "if you would just at least look at my immune
system and see if there's something wrong."
252
00:25:54,888 --> 00:25:59,226
We had this amazing laboratory that could look at
all kinds of parts of the immune system.
253
00:25:59,476 --> 00:26:00,644
So I put her through the whole nine yards.
254
00:26:00,894 --> 00:26:04,857
Everything we knew who had to do with the time.
And I came back to four weeks later
255
00:26:05,107 --> 00:26:10,070
and I said I'm sorry to say that there's something
terribly wrong with your immune system.
256
00:26:10,612 --> 00:26:16,034
The cells that are antiviral just don't do much in culture
that can't kill all the virally infected targets
257
00:26:16,285 --> 00:26:18,704
you're making all kinds of inflammatory cytokines.
258
00:26:19,037 --> 00:26:23,417
This is a sick immune system.
Well she burst into tears and I thought, oh my god.
259
00:26:23,667 --> 00:26:27,337
You know? Poor thing. I'm such an idiot
I mean I must've said this wrong.
260
00:26:27,588 --> 00:26:31,633
I should have broken it to her-
well she was crying with joy. It was joyful tears
261
00:26:31,884 --> 00:26:37,097
because she had been told by everyone there was
absolutely nothing wrong with her; it had to be in her head.
262
00:26:37,347 --> 00:26:39,641
And I was telling her there was something
terribly wrong with her
263
00:26:39,892 --> 00:26:46,607
and she was thrilled, happy, joyful
because it wasn't in her head.
264
00:26:46,857 --> 00:26:49,484
So then this word of mouth thing happened.
265
00:26:49,818 --> 00:26:54,448
And I had about twenty-five patients and I did the same
work up and there was a consistent look.
266
00:26:54,698 --> 00:26:55,949
[probing violin and xylophone music]
267
00:26:56,200 --> 00:27:01,205
So we published a paper that said
that there was a natural killer cell deficiency.
268
00:27:01,914 --> 00:27:04,833
These cells that are antiviral couldn't kill viruses.
269
00:27:05,792 --> 00:27:10,964
This illness appeared to be a form
of an acquired immune deficiency.
270
00:27:11,298 --> 00:27:17,304
Now if you go back historically, you can see illnesses
very similar to this called many different things.
271
00:27:17,554 --> 00:27:21,016
[music swells]
272
00:27:21,850 --> 00:27:28,524
Over the last century, there have been roughly
seventy outbreaks of a strikingly similar disease.
273
00:27:29,191 --> 00:27:35,030
In each case, often following an outbreak of a virus
like Epstein Barr or coxsackie,
274
00:27:35,280 --> 00:27:39,868
a small percentage
of people never seem to get better.
275
00:27:43,038 --> 00:27:46,959
For a long time, it was seen as a new form of polio.
276
00:27:49,086 --> 00:27:54,466
And later, encephalomyelitis,
which means inflammation of the brain and spinal cord
277
00:27:55,592 --> 00:27:59,763
until an outbreak in the 1980s when it was given a new name.
278
00:28:00,722 --> 00:28:03,809
A mystery disease has struck the town
of Incline Village, Nevada.
279
00:28:04,059 --> 00:28:05,644
A disease for which doctors have no cure.
280
00:28:05,894 --> 00:28:10,107
Doctors have diagnosed more than two hundred
cases of the same illness in this area.
281
00:28:10,357 --> 00:28:14,778
In all of my years of training and practice,
I've never seen anything quite like this.
282
00:28:15,028 --> 00:28:18,907
She's talking out of the lens? Okay.
283
00:28:20,909 --> 00:28:23,328
>> Jennifer: Do you remember the beginning of the outbreak
284
00:28:23,579 --> 00:28:28,333
of what would later come to be called
Chronic Fatigue Syndrome?
285
00:28:28,584 --> 00:28:32,004
I can recall to this day those moments.
286
00:28:33,922 --> 00:28:38,802
One was an epidemic of apparent mono
in a girl’s basketball team.
287
00:28:39,511 --> 00:28:46,435
And by July, August we had
over two hundred cases of adult viral-like syndrome.
288
00:28:47,603 --> 00:28:53,901
It wasn't that fact they were showing up sick,
it was the fact that they remained sick as the years went by.
289
00:28:54,359 --> 00:29:01,783
They not only remained sick, their sickness actually evolved
into something different than it was at the beginning.
290
00:29:02,367 --> 00:29:06,079
Now they were complaining of severe and debilitating fatigue.
291
00:29:06,330 --> 00:29:10,209
They began to complain of strange cognitive complaints.
292
00:29:10,709 --> 00:29:14,838
We were certain we were looking at something
that we have never ever heard of before
293
00:29:15,088 --> 00:29:18,050
and began thinking about asking for help.
294
00:29:22,054 --> 00:29:26,391
>> Jennifer: When the CDC came out to investigate,
they looked at patient’s charts,
295
00:29:26,725 --> 00:29:31,313
they noted that all of their lab results were normal,
and then they went skiing.
296
00:29:32,898 --> 00:29:38,737
Doctor William Reeves, that man in charge of investigating
Chronic Fatigue for the CDC,
297
00:29:38,987 --> 00:29:43,784
told us over the phone that one,
there is no viral cause for this problem,
298
00:29:44,326 --> 00:29:47,287
two, there are no immune system
abnormalities in patients with Chronic Fatigue.
299
00:29:47,538 --> 00:29:55,003
And three, there are no clusters. So when asked about the
illness at Lake Tahoe, he said that was hysteria.
300
00:30:03,887 --> 00:30:06,473
I was two during the Incline Village outbreak.
301
00:30:10,060 --> 00:30:13,856
Thirty years later we don't seem any closer.
302
00:30:14,982 --> 00:30:19,027
We know that ME can be triggered
by viruses and bacterial infections.
303
00:30:19,945 --> 00:30:26,451
But we don't know if the infection hides in places
where it's hard to measure, like the brain.
304
00:30:27,369 --> 00:30:31,623
Or if it's long gone but leaves in its wake
an autoimmune disease.
305
00:30:32,541 --> 00:30:37,421
There are now a handful of specialists,
but most patients will never get to see one.
306
00:30:39,381 --> 00:30:41,258
I was lucky.
307
00:30:42,759 --> 00:30:46,930
My doctor prescribed me an antiviral drug called Valcyte.
308
00:30:53,353 --> 00:30:56,815
Two days later I was walking again.
309
00:30:57,065 --> 00:31:04,698
[birds chirping]
310
00:31:10,329 --> 00:31:12,956
Hello!
311
00:31:16,126 --> 00:31:17,419
You alright?
312
00:31:17,669 --> 00:31:20,255
I’m good. I’m doing awesome!
313
00:31:21,757 --> 00:31:28,305
[marching band plays]
314
00:31:28,555 --> 00:31:30,557
Hey, how are you doing?
315
00:31:30,807 --> 00:31:32,392
Congratulations!
316
00:31:32,976 --> 00:31:37,314
[crowd cheering]
317
00:31:37,689 --> 00:31:41,193
Thirty-five!
318
00:31:46,823 --> 00:31:57,251
[crowd chanting]
319
00:31:57,501 --> 00:32:01,547
[car horn honking]
320
00:32:01,797 --> 00:32:10,681
[shouting]
321
00:32:10,931 --> 00:32:15,394
[bagpipes playing]
322
00:32:25,153 --> 00:32:26,947
I'm sorry please don't.
323
00:32:27,197 --> 00:32:30,826
Oh god.
324
00:32:31,076 --> 00:32:33,036
I'll get you some magnesium.
325
00:32:33,287 --> 00:32:35,330
Stop! I can't.
326
00:32:37,082 --> 00:32:42,880
I could feel everything in my head swelling
pushing out my eyeballs.
327
00:32:46,133 --> 00:32:55,934
[crying out in pain]
328
00:32:56,185 --> 00:33:02,733
I would try to speak and the sounds that
would come out of my mouth would be gibberish.
329
00:33:04,276 --> 00:33:06,528
[crying out]
330
00:33:06,778 --> 00:33:09,406
I can't understand, love.
331
00:33:25,672 --> 00:33:27,257
It's gonna pass.
332
00:33:27,508 --> 00:33:29,510
Ok.
333
00:33:29,760 --> 00:33:32,346
[trying to speak]
334
00:33:32,596 --> 00:33:34,598
Shh.
335
00:34:05,546 --> 00:34:06,547
How's Jen?
336
00:34:06,797 --> 00:34:10,592
Alright. She's much improved from two hours ago.
337
00:34:11,093 --> 00:34:15,264
You know, I still feel very lucky.
338
00:34:22,312 --> 00:34:24,690
Thank you. And fatherhood?
339
00:34:24,940 --> 00:34:25,399
[laughs]
340
00:34:27,150 --> 00:34:29,444
I can't imagine it any other way.
341
00:34:29,695 --> 00:34:31,071
-Yeah.
-Yeah.
342
00:34:31,780 --> 00:34:36,368
There are moments when I see us
through other people's eyes
343
00:34:36,618 --> 00:34:46,128
and somehow that's much sadder
than when I'm just kind of living our life together.
344
00:34:47,504 --> 00:34:49,423
This is normal for us. Like-
345
00:34:49,673 --> 00:34:51,550
>> Jennifer: It's so normal.
346
00:34:51,800 --> 00:34:57,097
And it's only when other people observe how not normal it is
347
00:34:58,056 --> 00:35:02,352
that I'm forced to recalibrate
348
00:35:05,898 --> 00:35:09,067
and sit with how hard this is.
349
00:35:13,030 --> 00:35:18,035
You know what it is about being observed?
It's that people feel sorry for me.
350
00:35:24,041 --> 00:35:25,375
And I don't know why that....
351
00:35:27,377 --> 00:35:30,923
>> Jennifer: Baby, I'm so sorry.
352
00:35:33,258 --> 00:35:35,135
It hits a nerve.
353
00:36:01,078 --> 00:36:04,331
He's the guy that first introduced me to email ten years ago.
354
00:36:15,050 --> 00:36:18,720
Technology is not something
that is oppositional to black people.
355
00:36:18,971 --> 00:36:20,347
Technology is opportunity.
356
00:36:24,685 --> 00:36:28,856
>>Jennifer: When I met Omar, I thought
here's a guy who's going to change the world.
357
00:36:30,399 --> 00:36:32,943
Another movie, I think I’ve got one, the forty year old intern.
358
00:36:33,193 --> 00:36:39,408
Now I feel like if he's with me
he can’t become the person he was meant to be.
359
00:36:40,534 --> 00:36:42,035
I think there’s definitely a sense on the internet
360
00:36:42,286 --> 00:36:47,165
that he is the first member of the internet
kind of generation to become president.
361
00:36:50,794 --> 00:36:57,509
>>Omar: What's impossible to capture
is just how hard this is day in day out.
362
00:37:02,181 --> 00:37:08,729
It’s hard to like go on Facebook
and see friends having kids, raising kids.
363
00:37:08,979 --> 00:37:13,525
I just feel like our lives are frozen
in this kind of sickness amber.
364
00:37:23,702 --> 00:37:26,663
I can't be anybody's mom like this.
365
00:37:26,914 --> 00:37:35,297
I can't be anybody's wife like this. I don't feel like I'm a person.
I haven't showered in forever and my hair...
366
00:37:36,256 --> 00:37:41,178
I’m nothing. I can't give you anything.
367
00:37:41,428 --> 00:37:42,930
You're my wife...
368
00:37:43,180 --> 00:37:45,974
I can’t give you anything.
369
00:37:46,225 --> 00:37:49,394
...and you bring joy into my life everyday.
370
00:37:54,608 --> 00:38:00,447
[ringing]
371
00:38:00,697 --> 00:38:01,406
Hello?
372
00:38:01,949 --> 00:38:03,617
Hi Jen.
373
00:38:03,867 --> 00:38:06,328
Is it super bright in there? Or how is the light for you?
374
00:38:06,578 --> 00:38:09,998
I usually keep it really dark in here but it's okay.
375
00:38:12,626 --> 00:38:17,506
Daddy, daddy.
376
00:38:17,756 --> 00:38:22,970
>> Leeray Denton: Before I got sick we just lived,
you know, husband and wife.
377
00:38:23,220 --> 00:38:27,975
The wife had dinner ready when the
husband came home and the house clean and...
378
00:38:30,769 --> 00:38:37,192
When you first got sick what did your
husband think of all this as it was happening?
379
00:38:37,526 --> 00:38:45,409
I saw ten to twelve doctors that told me
there was nothing wrong with me.
380
00:38:46,034 --> 00:38:52,916
I think that's maybe when Randy started
doubting a little bit about how sick I was.
381
00:38:54,168 --> 00:38:56,920
Oh, you guys.
382
00:38:58,922 --> 00:39:03,427
And all of my husband's family,
they just immediately jumped on that.
383
00:39:04,178 --> 00:39:11,643
"Oh, it's something mental. If the doctors can't
find something, it must just be in her head."
384
00:39:11,894 --> 00:39:12,936
It’s a gun?
385
00:39:13,812 --> 00:39:18,108
Ruger, seven and a half inches. Man. Wow!
386
00:39:20,903 --> 00:39:23,322
>>Leeray: We were married for fourteen years
387
00:39:23,572 --> 00:39:26,992
and I kind of feel like that's about as much as he could take.
388
00:39:38,837 --> 00:39:42,591
It was really scary when he left.
389
00:39:44,801 --> 00:39:57,439
I was worried about how I was going to cope with everything.
How I was going to do everything.
390
00:39:57,689 --> 00:40:01,068
I had some struggles with my faith.
391
00:40:05,822 --> 00:40:09,701
I just felt so alone.
392
00:40:16,917 --> 00:40:21,964
I honestly don't have any friends now. They're gone.
393
00:40:29,972 --> 00:40:33,225
The only people that never questioned me were my children.
394
00:40:44,403 --> 00:40:46,530
Hi Jessica!
395
00:40:47,197 --> 00:40:54,538
I remember Jessica before she had gone to school she would
clean the house and vacuum and do all this stuff for me.
396
00:40:56,582 --> 00:41:03,255
So they just kind of took over when he left.
They just jumped in there for me.
397
00:41:05,299 --> 00:41:13,557
I missed graduations, I missed ball games.
I missed things that mothers don't miss.
398
00:41:14,391 --> 00:41:20,105
But I was with my girls more than anybody
I know was with their kids.
399
00:41:21,023 --> 00:41:22,274
Did you see my back bends?
400
00:41:22,608 --> 00:41:23,275
Yes.
401
00:41:23,609 --> 00:41:24,735
Aren't you proud of me?
402
00:41:24,985 --> 00:41:27,738
Yeah, I'm real proud of you!
403
00:41:29,615 --> 00:41:33,160
You know they would come in my room and
sit and we'd talk for hours.
404
00:41:37,664 --> 00:41:42,920
That's the most important thing about being a mom
is when your kids need you you're there for them.
405
00:41:46,173 --> 00:41:48,842
Go, Casie, go! Go, go, go!
406
00:41:49,092 --> 00:41:52,971
I thought the worst day of my life was when
I got diagnosed but it wasn't.
407
00:41:54,640 --> 00:41:56,767
It was when Casie got diagnosed.
408
00:41:59,102 --> 00:42:03,857
That was the worst day of my life.
409
00:42:14,284 --> 00:42:15,786
>> Casie: I was in denial at first.
410
00:42:16,036 --> 00:42:20,958
I didn't want to think that was even a possibility
for me to get what she had.
411
00:42:22,751 --> 00:42:29,842
Probably a good six to seven months after I had been
very, very ill I found a neurologist.
412
00:42:31,009 --> 00:42:33,971
And he said, "Well I have good news and bad news."
413
00:42:34,346 --> 00:42:37,766
“The good news is I figured out what
you have and it's Chronic Fatigue Syndrome.
414
00:42:38,433 --> 00:42:43,146
"The bad news is there's nothing we can do and
you're going to have to go home and wait it out."
415
00:42:43,480 --> 00:42:44,398
“Wait for a cure."
416
00:42:44,648 --> 00:42:46,859
The bubbles swimming in the-
417
00:42:47,109 --> 00:42:49,570
Bubbles. Very good.
418
00:42:50,112 --> 00:42:52,197
Bobbing. Very good.
419
00:42:52,447 --> 00:42:56,618
Annabelle's asked me before,
"why are you and Grandma both sick?"
420
00:42:57,119 --> 00:43:01,790
and "what does that mean? Am I gonna get sick?"
421
00:43:02,165 --> 00:43:07,379
I don't think she's scared necessarily but she's
definitely asked questions and I don't really have answers.
422
00:43:12,676 --> 00:43:17,639
My dad did not believe my mom
was sick he says up until I got sick
423
00:43:19,183 --> 00:43:27,232
but when I got sick I guess it just jolted him
into believing wait a second this is real.
424
00:43:27,482 --> 00:43:30,319
Grandma says Hi Annabelle!
425
00:43:31,361 --> 00:43:36,450
I think Casie deals with this disease like
she does because she saw how I dealt with it.
426
00:43:37,743 --> 00:43:40,037
And it didn't stop me from being mom.
427
00:43:40,746 --> 00:43:43,749
Can you see? My arms are getting tired.
Can you still see it?
428
00:43:46,126 --> 00:43:49,630
Having kids with this would be the hardest thing you ever do
429
00:43:50,339 --> 00:43:54,510
and it would be the best thing that you'd ever do.
430
00:43:55,260 --> 00:43:56,512
You'd be a great mom.
431
00:43:58,847 --> 00:44:02,267
You'd be a great mom.
432
00:44:21,245 --> 00:44:22,913
[chirps]
433
00:44:23,163 --> 00:44:25,040
You're like an hour old.
434
00:44:28,418 --> 00:44:36,510
>> Jennifer: I was starting to see that maybe we didn’t have to
let go of everything we’d hoped for and wanted.
435
00:44:37,511 --> 00:44:40,514
But I still had so many basic questions.
436
00:44:42,724 --> 00:44:45,727
If we had kids, would it be safe?
437
00:44:46,562 --> 00:44:50,274
Could my son or daughter get what I have?
438
00:44:54,361 --> 00:44:59,449
And I didn’t know why so many doctors
couldn’t answer these basic questions.
439
00:45:01,451 --> 00:45:05,163
Doctors want to know what to do
but it’s not in the textbooks of medicine.
440
00:45:05,414 --> 00:45:06,665
'What’re we supposed to do?' You know
441
00:45:06,915 --> 00:45:10,085
so they have to go the same place you go and google it.
442
00:45:12,254 --> 00:45:16,717
In the United States we're still graduating
class after class of medical students
443
00:45:16,967 --> 00:45:21,763
that haven't even heard of this illness and
where to even look for its diagnostic criteria.
444
00:45:22,014 --> 00:45:25,601
The name, this Chronic Fatigue Syndrome name,
has been part of it.
445
00:45:26,018 --> 00:45:29,021
And let me be a feminist for a moment:
being a woman is part of it.
446
00:45:29,271 --> 00:45:33,275
Eighty-five percent of the people
with this illness are female.
447
00:45:33,525 --> 00:45:39,615
[heartbeats]
[foreboding cello piece begins]
448
00:45:40,616 --> 00:45:43,118
Hysteria.
449
00:45:43,535 --> 00:45:46,914
It’s an idea as old as written history.
450
00:45:49,625 --> 00:45:53,795
The Egyptians thought it was caused by a wandering womb.
451
00:45:54,046 --> 00:45:57,090
The Greeks blamed sexual deprivation.
452
00:45:58,050 --> 00:46:01,178
Sigmund Freud? Repressed memories.
453
00:46:01,637 --> 00:46:08,769
Some lessons of childhood can become the source of illness
which has no discoverable basis in physical condition.
454
00:46:09,019 --> 00:46:14,525
Today what we'd like to do is to demonstrate the mechanism
known as conversion reaction.
455
00:46:15,275 --> 00:46:20,322
Our patient is a young woman,
she had some rather puzzling symptoms.
456
00:46:22,199 --> 00:46:27,579
We now call hysteria “functional disorder”
or “conversion disorder,”
457
00:46:27,955 --> 00:46:32,167
which is what I was originally diagnosed with.
458
00:46:36,547 --> 00:46:42,469
I hear from women all of the time
who were later diagnosed with fibromyalgia,
459
00:46:42,803 --> 00:46:48,934
lyme disease, lupus, who were initially told
they were hypochondriacs.
460
00:46:49,184 --> 00:46:53,856
80% of autoimmune disease patients are women.
461
00:46:54,481 --> 00:46:57,985
I can’t help but wonder if that’s why we’re disbelieved.
462
00:46:58,235 --> 00:47:01,738
Feelings of more than usual tiredness,
nervousness, and discomfort
463
00:47:01,989 --> 00:47:07,119
it suggests emotional difficulties
which the patient herself does not understand.
464
00:47:08,829 --> 00:47:14,126
The problem with psychosomatic diagnoses
is that they can never be proven.
465
00:47:14,585 --> 00:47:21,175
They are names we give to illnesses when we can’t find
a biological cause but that doesn’t mean there isn't one.
466
00:47:22,009 --> 00:47:24,678
The patient, as you can see, is a rather dependent girl.
467
00:47:24,928 --> 00:47:31,143
A girl who under many circumstances
cannot admit to angry feelings.
468
00:47:32,394 --> 00:47:38,317
This is the story we tell until doctors
can see our disease from the outside.
469
00:47:39,693 --> 00:47:46,700
MS was called hysterical paralysis right up to
the day they invented a CAT scan machine.
470
00:47:47,826 --> 00:47:53,707
Because now we had the capacity to look at the brain
and see those great big white spots of demyelination.
471
00:47:53,957 --> 00:47:56,543
So it went from hysterical to real.
472
00:47:56,793 --> 00:47:58,879
[cello and heartbeat music continues]
473
00:47:59,129 --> 00:48:03,091
>> Jennifer: We used to institutionalize women with hysteria.
474
00:48:08,514 --> 00:48:13,477
It’s always tempting to look at the past
as something strange and distant,
475
00:48:13,727 --> 00:48:16,855
to say “thank god we know better now.”
476
00:48:21,902 --> 00:48:29,618
But what I could never have imagined, had I not
gotten this disease, is that we’re still doing this.
477
00:51:02,479 --> 00:51:12,322
In Denmark the health authorities do not
recognize ME as a physical disease.
478
00:51:12,573 --> 00:51:15,909
They say it is a psychiatric disease.
479
00:53:15,529 --> 00:53:20,659
Karina is only being seen by the psychiatric doctors
that took her away from her parents.
480
00:53:20,993 --> 00:53:24,538
She's not been allowed to be seen by any other doctors.
481
00:53:24,788 --> 00:53:26,999
That's where the fight really started.
482
00:53:27,875 --> 00:53:31,587
>>Jennifer: When I first heard of this story
I could hardly believe it.
483
00:53:33,046 --> 00:53:40,137
But I learned that in many countries doctors have
been removing severe patients from their homes for decades.
484
00:53:40,804 --> 00:53:43,056
This is their general idea:
485
00:53:43,307 --> 00:53:47,019
your symptoms are being caused by false
beliefs you have about your illness.
486
00:53:48,437 --> 00:53:53,066
Your parents indulge these beliefs,
and this has kept you sick.
487
00:53:53,317 --> 00:53:58,572
So removing you from their influence
is the only way you can get better.
488
00:54:01,033 --> 00:54:03,952
Do you know what you were accused of?
489
00:55:55,606 --> 00:56:02,029
Maybe it's harder to see the harm
when it's caused by good intentions.
490
00:56:09,328 --> 00:56:15,209
When my neurologist diagnosed me, he said
my symptoms were caused by a distant trauma.
491
00:56:15,834 --> 00:56:19,463
One I might not even remember.
492
00:56:26,428 --> 00:56:34,686
So I walked home
in spite of the pain in my legs, the burning in my brain.
493
00:56:38,315 --> 00:56:47,866
My body was screaming but I ignored it
because he told me, 'this has no biological cause.'
494
00:56:52,746 --> 00:56:55,374
As soon as I walked through the door I collapsed.
495
00:56:57,417 --> 00:57:01,839
That was the last time I ever walked that far.
496
00:57:07,719 --> 00:57:10,347
I used to be angry
497
00:57:10,597 --> 00:57:13,475
maybe I still am
498
00:57:13,725 --> 00:57:17,563
but I believe my doctor wanted to help.
499
00:57:18,522 --> 00:57:24,027
When medicine has no answers for you,
where do you turn?
500
00:57:24,570 --> 00:57:29,449
I have the cure to mother-freaking-chronic fatigue.
501
00:57:29,867 --> 00:57:34,830
I cured my Chronic Fatigue
with a high carb vegan diet in three days.
502
00:57:35,080 --> 00:57:37,040
Started eating the good foods, the whole foods.
503
00:57:37,291 --> 00:57:39,835
Balance your chemistry, acid alkaline balance.
504
00:57:40,085 --> 00:57:43,547
Two dietary supplements uh that can really really help.
505
00:57:49,344 --> 00:57:52,014
It's like a space alien.
506
00:57:54,516 --> 00:57:56,476
The lightning process changed my life.
507
00:57:56,727 --> 00:57:59,062
I've been tapping a lot.
508
00:57:59,313 --> 00:58:01,565
I take magnesium every day.
509
00:58:06,904 --> 00:58:11,283
I don't really know what's going on
but something I'm taking it feels like it's working.
510
00:58:11,533 --> 00:58:15,329
Of course I would never know what is was
I just had five new things in.
511
00:58:15,829 --> 00:58:18,290
Oh, delicious gastro intestinal support.
512
00:58:18,540 --> 00:58:19,791
>>Jennifer: Yes!
513
00:58:20,751 --> 00:58:28,926
I feel like I'm Betty Flintstone, you know?
Like this is some crazy prehistoric dinosaur food.
514
00:58:29,343 --> 00:58:31,470
Whoa!
515
00:58:34,431 --> 00:58:42,898
Though my husband is sort of thinking a little bit about fecal
transplants and up self administered hookworm,
516
00:58:44,525 --> 00:58:54,201
I think even I have certain lines that I at least
at this point in time am not quite ready to cross.
517
00:59:00,165 --> 00:59:04,419
It's like the craziest high school science
experiment you've ever done.
518
00:59:05,003 --> 00:59:13,595
It's just technical enough to feel like,
wow I'm doing something kind of novel and scientific.
519
00:59:13,846 --> 00:59:21,687
So, the goal is to basically stun the worms
and they drop out of your gut.
520
00:59:28,193 --> 00:59:33,073
A few months ago I started avoiding
really small amounts of toxic mold
521
00:59:33,323 --> 00:59:35,617
and since then my exercise intolerance
has disappeared.
522
00:59:35,868 --> 00:59:38,954
I’m trying to avoid mold at all costs.
523
00:59:39,204 --> 00:59:43,542
There is quite a bit of evidence of toxicity of mold.
524
00:59:44,334 --> 00:59:48,463
I started hearing from more and more people
who were seeing huge improvements
525
00:59:48,714 --> 00:59:53,302
by leaving their homes and going to drier climates.
526
01:00:03,187 --> 01:00:08,984
>>Omar: Will strategically reducing my mold exposure
make me a better lover?
527
01:00:09,318 --> 01:00:11,612
Are you okay with this?
528
01:00:12,863 --> 01:00:14,406
I'm okay with this.
529
01:00:14,656 --> 01:00:17,784
But you think it's gotten a little crazy.
This is you letting off a little steam.
530
01:00:18,035 --> 01:00:23,498
There's no way to approach this except as crazy
531
01:00:23,749 --> 01:00:30,255
but just because it's crazy doesn't mean it's wrong -
but there's no doubt that it's crazy.
532
01:00:32,341 --> 01:00:34,551
I know.
533
01:00:36,845 --> 01:00:38,597
>>Jennifer: Love, I'm walking!
>>Omar: Yeah.
534
01:00:38,847 --> 01:00:45,604
>>On the path!
>>Omar: Yeah.
>>Like, just 'cause- it's...
535
01:00:48,106 --> 01:00:49,316
Easy trigger.
536
01:00:51,193 --> 01:00:53,820
You gotta come back up that. Don’t… don't-
537
01:01:20,013 --> 01:01:22,057
>>Omar: What can I do?
538
01:01:22,724 --> 01:01:24,268
Outside.
539
01:01:32,317 --> 01:01:34,111
Feeling better?
540
01:01:34,570 --> 01:01:37,906
A little. I know this seems really hard
and I mean it is but like
541
01:01:38,156 --> 01:01:40,534
just think of the gift that we live here
and that there's space.
542
01:01:40,784 --> 01:01:43,579
How is that a gift if it makes you sick?
543
01:01:43,912 --> 01:01:46,290
You know it doesn't just touch clothes,
it doesn't just touch the car,
544
01:01:46,540 --> 01:01:49,877
it doesn't just touch the house,
it doesn't just touch like where we live.
545
01:01:50,127 --> 01:01:55,132
Like it potentially touches every aspect
of our lives and that's scary to me.
546
01:01:55,757 --> 01:02:02,723
If you could have the signals that I have for like
an hour, I feel like everything would change.
547
01:02:03,682 --> 01:02:12,816
Right, and conversely, if you lived with this total
absence of these signals you would feel insane
548
01:02:13,066 --> 01:02:19,615
every time you are making some great adjustment
in your life for something that is-
549
01:02:19,865 --> 01:02:23,702
You can't see or touch or taste or experience.
Totally invisible.
550
01:02:45,390 --> 01:02:47,184
Definitely do not go inside.
551
01:02:47,434 --> 01:02:47,851
Okay, you see-
552
01:02:48,101 --> 01:02:50,229
Or get too close honestly.
553
01:02:51,522 --> 01:02:54,358
That's an impossible request to not get too close to it.
554
01:02:54,608 --> 01:02:57,194
Well I mean I'm saying you could like be wearing mold free
clothes when you're around the tent.
555
01:02:57,444 --> 01:02:58,737
Why don't I take off all my clothes?
556
01:02:58,987 --> 01:03:03,534
-Yeah, do that!
-So there's a hook. There's a hook here.
-I'm trying to be serious, love.
557
01:03:04,910 --> 01:03:08,914
And I'm trying to be serious. There's no way for
me to not touch the tent and assemble the tent.
558
01:03:09,164 --> 01:03:12,000
I think what I'm trying to say is that I realize
being in mold free clothes
559
01:03:12,251 --> 01:03:16,964
is probably better
for interacting with our home.
560
01:03:19,132 --> 01:03:21,343
Would you mind changing?
561
01:03:21,593 --> 01:03:25,597
Into what? Like these were mold free. You sniffed these.
These were mold free.
562
01:03:25,848 --> 01:03:27,391
Yeah, but you went inside the house.
563
01:03:29,560 --> 01:03:34,106
I don't want you to change into mold free clothes.
I wanted you to change to clothes you can wear in the house.
564
01:03:34,439 --> 01:03:39,111
I cannot change clothes every time I walk in
and outside the house. That is, that is-
565
01:03:39,611 --> 01:03:42,573
In our new house or my new house at least
566
01:03:42,948 --> 01:03:46,493
you have to be very careful otherwise you have to
buy this tent and do it all over again which is kind of silly.
567
01:03:46,743 --> 01:03:48,120
What do you want me to do right now?
568
01:03:48,370 --> 01:03:51,707
I think you should probably shower and put on new clothes.
569
01:03:51,957 --> 01:03:56,461
Okay. Well then you're on your own for now.
570
01:03:56,712 --> 01:03:58,881
I really don't make the rules.
571
01:03:59,131 --> 01:04:02,009
You have to appreciate it feels insane.
572
01:04:02,426 --> 01:04:05,387
Like I changed my clothes an hour ago.
Now I'm changing them again.
573
01:04:05,804 --> 01:04:09,641
It's a little maddening.
I'll just avoid you like I'm the plague.
574
01:04:33,832 --> 01:04:39,379
I used to think if I looked hard enough
I was going to find a cure
575
01:04:40,088 --> 01:04:43,258
and I have found a lot of things that have helped.
576
01:04:43,509 --> 01:04:48,430
The antivirals, mold avoidance,
even some of the supplements;
577
01:04:49,097 --> 01:04:52,184
but I’m not going to figure this out on my own.
578
01:04:52,434 --> 01:04:57,981
Inside every cell there's there's your energy making machine.
It's called the mitochondria.
579
01:04:58,941 --> 01:05:04,446
So in this illness, each individual cell can have
real problems capturing the
580
01:05:04,696 --> 01:05:09,368
things they need that your body uses
to make energy like oxygen and glucose.
581
01:05:09,952 --> 01:05:14,665
At a cellular level you become less and less effective
like a wound down clock.
582
01:05:18,460 --> 01:05:22,297
>> Jennifer: If our neurons don’t have enough energy
we can’t think.
583
01:05:23,423 --> 01:05:27,594
If our immune cells don’t have enough energy
we can’t fight viruses.
584
01:05:29,096 --> 01:05:32,724
And if our muscles don’t have enough energy we can’t move.
585
01:05:35,018 --> 01:05:40,941
But where you can really see it is when we crash
after physical or mental exertion.
586
01:05:42,901 --> 01:05:45,904
Our cells give out and all of our symptoms flare.
587
01:05:48,866 --> 01:05:53,871
Dr. Klimas's team can actually track this crash point
on a metabolic level.
588
01:05:54,788 --> 01:05:56,790
>> Dr. Klimas: There's two different kinds of energy.
589
01:05:57,040 --> 01:06:02,045
There's aerobic energy and there's anaerobic
energy that you get from the cell itself.
590
01:06:02,296 --> 01:06:07,676
We teach people how to stay
in that tiny little space of aerobic. And it is little.
591
01:06:07,926 --> 01:06:10,971
Sometimes it's two minutes,
sometimes it's three minutes of effort.
592
01:06:12,222 --> 01:06:15,559
You can safely operate in this space
without crashing.
593
01:06:18,687 --> 01:06:22,816
The minute that you go into the anaerobic space
and you ask the cells to make energy
594
01:06:23,066 --> 01:06:25,944
you're in big trouble because you don't have it.
595
01:06:26,486 --> 01:06:31,366
>>Jennifer: I think this is half the reason
this disease is so hard to understand.
596
01:06:33,619 --> 01:06:40,459
Why someone like me can be walking
one moment and look completely normal
597
01:06:42,294 --> 01:06:45,672
and then a few hours later crash in bed for days.
598
01:06:48,509 --> 01:06:52,638
I feel like I’m this broken battery that’s stuck at 10%.
599
01:06:54,640 --> 01:07:00,270
And when we crash, we disappear,
so you never see us at our worst.
600
01:07:03,357 --> 01:07:08,654
I was amazed to find out how many questions
we’ve never really asked.
601
01:07:08,987 --> 01:07:11,490
Why do more women get it?
602
01:07:12,157 --> 01:07:14,451
Is it genetic?
603
01:07:14,701 --> 01:07:20,290
And why thirty years into it
are we still no closer to a cure?
604
01:07:38,141 --> 01:07:40,519
Hey, how are you doing?
605
01:07:40,769 --> 01:07:47,568
Oh, good. This is kind of amazing
type of interview. Yeah.
606
01:07:48,026 --> 01:07:51,113
You've spent your life tackling really hard problems.
607
01:07:51,363 --> 01:07:56,243
Why has it been so hard to figure out
what's going on in patients like me?
608
01:07:56,493 --> 01:08:00,414
What's usually hard about a problem
is that you often have to take
609
01:08:00,664 --> 01:08:04,209
a very different perspective
than what is conventional.
610
01:08:05,335 --> 01:08:09,173
I look on trying to figure out if CFS
as one of the most difficult things
611
01:08:09,423 --> 01:08:10,924
I've ever tried to tackle.
612
01:08:13,260 --> 01:08:17,556
CFS is an extremely complicated disease
involving the immune system
613
01:08:17,806 --> 01:08:20,809
and the brain and who knows what else.
614
01:08:22,102 --> 01:08:24,479
We're studying a very small population
of severely ill patients
615
01:08:24,730 --> 01:08:29,359
and we're collecting billions
of data points on each patient.
616
01:08:30,777 --> 01:08:33,864
We're probably collecting more data
on an individual
617
01:08:34,114 --> 01:08:36,366
than has ever been collected
for any disease in history.
618
01:08:39,369 --> 01:08:44,625
I've teamed up with really superb scientists.
Three of them have a Nobel Prize.
619
01:08:45,584 --> 01:08:49,087
In two/three months we'll have some data to sit
at the table and look at- not publish-
620
01:08:49,338 --> 01:08:52,508
just you know some of the data to look at.
That would be real.
621
01:08:53,175 --> 01:08:56,678
Almost exclusively the organization
that funds medical research
622
01:08:56,929 --> 01:08:59,056
is the National Institutes of Health.
623
01:08:59,556 --> 01:09:04,978
Chronic Fatigue Syndrome is the lowest funded
of any major disease by a lot.
624
01:09:08,649 --> 01:09:14,655
Many of the people that are at NIH and have in the past
not believed it's real.
625
01:09:14,905 --> 01:09:17,741
So why would you fund
something that's not real?
626
01:09:19,201 --> 01:09:22,663
I've written two applications
to the National Institutes of Health.
627
01:09:23,121 --> 01:09:26,124
Both of them were turned down without review.
628
01:09:26,375 --> 01:09:29,628
We have to attempt every door at NIH.
629
01:09:29,878 --> 01:09:35,050
If we get shut out from every door
then the only recourse we have is go to Congress.
630
01:09:49,231 --> 01:09:54,236
This is what’s called TPN: total peripheral nutrition.
631
01:09:55,362 --> 01:09:58,574
And that’s all he gets for food.
632
01:10:01,118 --> 01:10:04,371
The speech center gets affected.
633
01:10:06,373 --> 01:10:09,626
It's probably been a year since he's talked.
634
01:10:28,312 --> 01:10:31,982
He loved traveling and taking photographs.
635
01:10:33,317 --> 01:10:38,405
One day he asked us to take his camera out of his room.
636
01:10:39,114 --> 01:10:45,329
And then he motioned for me to let him hold it for a minute.
637
01:10:45,579 --> 01:10:53,879
And he just hugged his camera and then told it goodbye
and I took it out of the room.
638
01:11:07,726 --> 01:11:11,021
He was my best friend.
639
01:11:11,271 --> 01:11:15,359
It's hard to find somebody that knows you
like your sibling does when you're close like that.
640
01:11:21,532 --> 01:11:24,826
[Doo-wop]
641
01:11:30,082 --> 01:11:33,752
>> Janet: March 26th, 1990.
642
01:12:16,086 --> 01:12:19,089
I got to try to rewrite this grant and put it in again.
643
01:12:19,464 --> 01:12:22,384
>>Janet: I just found myself getting pissed off.
644
01:12:22,634 --> 01:12:28,140
All these people are clamoring for funding
and they tell you no for the stupidest reasons.
645
01:12:28,473 --> 01:12:33,020
I think they'll come around. I just worry how long
it's going to take to come around.
646
01:12:33,270 --> 01:12:37,941
>>Janet: Well maybe we should tell them we'd like them
to come around before our son is dead.
647
01:12:38,192 --> 01:12:40,736
Yes.
648
01:12:45,282 --> 01:12:48,285
>>Ron: I'm working against the clock.
649
01:12:48,994 --> 01:12:51,330
How much time does he have?
650
01:12:52,456 --> 01:12:58,003
Will it get to the point where some of his organs
start shutting down or something like that? I worry about that.
651
01:13:04,134 --> 01:13:08,972
>> Janet: Sometimes I just dream that that door opens
and he walks out the door.
652
01:13:10,432 --> 01:13:15,687
One of the highest death rate from CFS is suicide,
653
01:13:15,938 --> 01:13:22,069
which really really scares me because I don't want
him gone before they figure out a way to help him.
654
01:13:30,118 --> 01:13:37,417
I can't do it for much longer.
655
01:13:38,585 --> 01:13:40,587
I don't...
656
01:13:44,967 --> 01:13:47,469
It's like I'm just watching my life disappear.
657
01:13:49,388 --> 01:13:54,393
I'm watching everybody else grow up and do all the
things that people do when they grow up.
658
01:13:55,394 --> 01:14:01,191
I just spend all my life in fucking -
in a house watching the world just pass.
659
01:14:41,231 --> 01:14:44,067
>>Jennifer: We’ve lost so many people.
660
01:14:46,820 --> 01:14:53,410
I hear stories of other children
ripped from their home by police.
661
01:15:00,375 --> 01:15:04,254
I’ve lost friends to suicide.
662
01:15:06,840 --> 01:15:12,304
I’ve had friends who were doing okay
and then just got worse.
663
01:15:15,849 --> 01:15:20,270
Sickness doesn’t terrify me
and death doesn’t terrify me.
664
01:15:22,814 --> 01:15:30,531
What terrifies me is that you can disappear because
someone’s telling the wrong story about you.
665
01:15:32,366 --> 01:15:37,913
I feel like that’s what’s happened
to all of us who are living this.
666
01:15:43,043 --> 01:15:55,055
And I remember thinking, there’s no one coming to look for me
because no one even knows that I went missing.
667
01:15:56,765 --> 01:16:00,394
[soft piano]
668
01:16:02,187 --> 01:16:04,815
All of those things...
669
01:16:05,065 --> 01:16:13,866
Those things, those… really simple things.
670
01:16:19,454 --> 01:16:27,337
Not realizing how fragile they were because you never do.
671
01:16:28,714 --> 01:16:31,967
You never do.
672
01:16:38,348 --> 01:16:41,101
That life was gone.
673
01:16:44,396 --> 01:16:47,274
But here I had this new one.
674
01:16:50,402 --> 01:16:52,196
And I had to fight for it.
675
01:16:53,572 --> 01:16:57,034
Hello everyone, welcome!
I think we'll probably have more
676
01:16:57,284 --> 01:16:59,077
people joining us um in then next minute or two.
677
01:16:59,328 --> 01:17:03,332
I'm fromthe Netherlands. I'm here with Annette, I think?
678
01:17:03,582 --> 01:17:05,834
Hi, Sebastian, I'm from Hamburg.
679
01:17:06,084 --> 01:17:09,338
In South Africa we're very much behind.
680
01:17:09,588 --> 01:17:12,716
The doctor's really have zero clues,
you know, they don't know anything yet.
681
01:17:12,966 --> 01:17:17,721
We're kind of both organizing a day of protest
as well as organizing individual protests.
682
01:17:18,096 --> 01:17:21,975
People obviously are going to find it
very hard to get to this protest.
683
01:17:22,643 --> 01:17:26,146
I'm not somebody who's ever done protests before.
I have no energy to do one.
684
01:17:26,396 --> 01:17:31,360
You can still be out there in- especially if
you've got a wheelchair that reclines
685
01:17:31,610 --> 01:17:33,737
but also in a lawn chair-
686
01:17:34,696 --> 01:17:42,204
>> Jennifer:The only way anything is ever going
to change is if people can see us.
687
01:20:00,968 --> 01:20:08,308
[Ren Gill singing "Patience"]
688
01:20:20,779 --> 01:20:26,034
It's alright, it’s ok,
I'm feeling brave gonna face this day
689
01:20:26,285 --> 01:20:31,748
It's ok, it’s alright
no tears will kiss my cheeks tonight
690
01:20:31,999 --> 01:20:37,212
it’s all good, and I’m just fine
my words ring out like hollow shells
691
01:20:37,462 --> 01:20:43,177
should slow down, it takes time
but time moves slow I know this well
692
01:20:43,427 --> 01:20:47,806
and my heart breaks one thousand times a day
693
01:20:48,724 --> 01:20:52,519
but for every hope that dies another one takes its place
694
01:20:52,769 --> 01:20:59,318
because I have the strength of a mountain
I’ve got the courage of the deep blue sea
695
01:20:59,568 --> 01:21:05,657
and I have the heart of a lion
and the stars burn bright inside of me
696
01:21:05,908 --> 01:21:13,916
and although you test me my God I stand so proudly can’t
you see that I have the strength of a mountain
697
01:21:14,166 --> 01:21:17,336
and I’ll take all you throw at me
698
01:21:17,586 --> 01:21:22,132
I'm here on behalf of my son Gordon who is 22.
699
01:21:22,382 --> 01:21:25,636
He's been sick since he was twelve.
700
01:21:25,886 --> 01:21:30,516
We're live in Dallas, Texas for
Millions Missing for ME CFS.
701
01:21:33,352 --> 01:21:40,275
We're on our way to Millions Missing protest in Lansing.
We stayed at the hotel last night.
702
01:21:40,526 --> 01:21:44,446
Hey everybody! We're here in Melbourne, Australia-
703
01:21:52,162 --> 01:21:59,378
If our governments across the world today do not see us,
do not take action on this crisis,
704
01:21:59,628 --> 01:22:03,465
then this pattern
is due to repeat itself.
705
01:22:05,092 --> 01:22:10,681
I have the strength of a mountain
I've got the courage of the deep blue sea
706
01:22:10,931 --> 01:22:16,687
I have the heart of a lion
and the stars they burn bright inside of me
707
01:22:16,937 --> 01:22:23,026
and although you test me my God
I stand so proudly can't you see
708
01:22:23,277 --> 01:22:29,616
I have the strength of a mountain
and I’ll take all you throw at me
709
01:22:46,592 --> 01:22:52,723
>> Omar:Every time you do something you love
I know you're going to end up paying for it.
710
01:22:54,808 --> 01:22:57,144
>>> All: Thank you!
711
01:22:57,394 --> 01:23:01,940
>> Omar: But I also know that's
what makes you feel alive.
712
01:23:02,191 --> 01:23:04,776
Bye! Nice to see you all!
713
01:23:07,321 --> 01:23:12,451
I know you keep saying not to think of it like this
but I just feel like I'm like robbing you
714
01:23:12,701 --> 01:23:21,460
and I'm hurting you and
I think that's just really hard and...
715
01:23:21,710 --> 01:23:27,341
>> Omar: All I can tell you, love, is
I am so grateful that you are in my life.
716
01:23:27,799 --> 01:23:39,186
You know if I can talk to you?
If I can like hold you tight? I'm good.
717
01:23:59,706 --> 01:24:03,001
>> Randy: I remember the first time I saw you,
you were getting out of the car.
718
01:24:03,252 --> 01:24:06,713
Your mom was in the car with you.
>> Leeray: Yeah.
719
01:24:06,964 --> 01:24:11,176
And I thought how cute you were. Wholesome.
720
01:24:13,512 --> 01:24:18,392
>> Leeray: Randy! Come help.
Don't just record you sitting over there.
721
01:24:19,643 --> 01:24:23,522
>> Randy: When I left I honestly,
honestly thought you would get better.
722
01:24:23,897 --> 01:24:29,361
I thought that at this point
if I'm gone I'm not a crutch for her
723
01:24:30,237 --> 01:24:33,073
and she'll have to get better
because she'll have to.
724
01:24:33,490 --> 01:24:38,245
I felt like if I took care of you guys financially
that everything would work out for you guys
725
01:24:38,495 --> 01:24:39,288
and ya'll would wind up being happier.
726
01:24:39,538 --> 01:24:41,999
And I made choices that I regret.
727
01:24:42,249 --> 01:24:50,215
And uh I don't know if there's enough life
left in me to make it up to you but I will try.
728
01:25:46,897 --> 01:25:49,483
>> Jessica: My ME goes up and down.
729
01:25:51,360 --> 01:25:54,363
I spend most days in bed.
730
01:25:58,492 --> 01:26:03,664
Life doesn't just stop because you've got severe ME.
731
01:26:11,839 --> 01:26:19,763
So even though I've been stuck in a room
or my parameters are so small, I've still lived.
732
01:26:20,681 --> 01:26:21,723
Is it recording?
733
01:26:21,974 --> 01:26:29,273
Yep.
Woo!
734
01:26:42,494 --> 01:26:47,708
>> Jennifer: Before I got sick,
every book I read, every movie I saw said,
735
01:26:47,958 --> 01:26:53,714
"when you fall ill, either you will find the cure
or die trying."
736
01:26:55,841 --> 01:26:58,510
It always ends in triumph or tragedy
737
01:27:00,137 --> 01:27:02,806
But that’s not my story.
738
01:27:03,056 --> 01:27:05,851
At least not yet.
739
01:27:11,899 --> 01:27:14,484
-Jennifer can you hear me?
-Yeah I can.
740
01:27:14,902 --> 01:27:20,365
Alright can you see a framing? Alright, I'm rolling.
741
01:27:25,829 --> 01:27:29,291
There's the sun.
742
01:27:37,424 --> 01:27:43,514
[quiet, striving symphony begins]
743
01:27:43,764 --> 01:27:47,976
And somehow it's almost as good
as actually being there.
744
01:27:57,653 --> 01:28:00,948
This is so beautiful.
745
01:28:03,867 --> 01:28:06,411
This is incredible. I don't even...
746
01:28:25,222 --> 01:28:29,309
You have to be able to hold two things in your head.
747
01:28:31,895 --> 01:28:37,025
This illness destroyed my life.
748
01:28:40,946 --> 01:28:46,577
But what it showed me, I could never give that back.
749
01:29:02,092 --> 01:29:07,222
I want to be well. I want to wake up tomorrow and be well.
750
01:29:08,515 --> 01:29:14,229
And yet I am grateful for every inch of my life.
751
01:29:17,399 --> 01:29:24,156
I am still here.
I am still here.
752
01:29:24,573 --> 01:29:29,620
[Lhasa de Sela sings “Love Came Here"]
753
01:29:30,245 --> 01:29:39,922
There is no end to this story
754
01:29:42,174 --> 01:29:54,895
no final blow or glory
755
01:29:56,855 --> 01:30:08,700
love came here and never left
756
01:30:09,368 --> 01:30:18,585
now that my heart is open
757
01:30:21,880 --> 01:30:34,726
it can be closed or broken
758
01:30:35,310 --> 01:30:45,904
love came here and never left
759
01:30:48,407 --> 01:30:59,710
now I have to live with loving you forever
760
01:31:12,181 --> 01:31:15,434
What are you doing?
66838
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