(strained breathing)
(strained breathing continues)
(thud)
(sigh)
(thud)
Omar Wasow : Directions to Princeton Hospital.
GPS Service : Getting directions to Princeton Animal Hospital.
Omar : Directions to Princeton Hospital.
GPS : Getting directions to Princeton Animal Hospital.
Omar : Princeton Hospital.
GPS : Here's Princeton Animal Hospital. It's about two and a half miles south.
Jennifer Brea : Can you ask one more time?
Omar : Hospitals near Princeton.
GPS : Searching for youth hostels and Inns.
(machines beeping)
What were you saying love?
Just one has to be careful.
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.
Jennifer : From as early as I can remember
I wanted to swallow the world whole.
Dreaming about all the places I would go
and the things I would see
I thought if I dreamed hard enough anything was possible
A film by Jennifer Brea.
Today we talked with a U.S. student studying abroad in Beijing.
Jennifer : Well I know some some of us were kind of scared atually because...
We are constantly telling ourselves a story
about who we are
and where we're going.
For example
that's my husband, Omar.
I met him when I was twenty-five.
(people cheering and laughing)
We were both at Harvard getting our PhDs
Three months later I knew that I wanted to marry him.
I meet Jen when she's visiting campus and I'm like, "Wow who's that? She's really cute!" And...
Really?
Yeah and...
but I've got no game, right?
So the whole session I'm thinking like, "How do I start a conversation with her?"
And then at the end of the session she comes over and talks to me.
And I was like yes! And she says like, "what is going on tonight?"
and I was just like, "this never happens to me! This never happens to me."
Person filming : Omar holding the back of a kayak flailing all over the place to try to get in.
Hopefully this is just a kayaking trip, not a metaphor.
Jennifer : I mean sure, we all know nothing lasts forever
I just thought I would have more time.
And then one day I got a fever of a hundred and four point seven degrees.
I got better but something wasn't right.
I would go to the kitchen to get a glass of water and then I wouldn't be able to move again.
I don't know what I did to myself. I don't think I can get up off the couch.
(grunt)
I know you might be saying to yourself if I really couldn't stand up why would I be filming it? Well...
I kind of think that someone should see this.
That first year I had six infections.
(whispering) Okay, turn off the light.
I basically would get out of bed, go to class, and then I was in bed again.(
I'd go to the doctor and he would tell me, "you're just dehydrated. Everyone gets stressed."
So I don't know if this is going to happen at the doctor's office or not but I...
I figure it's good to just keep documenting.
The right side of my face feels numb.
I feel like my brain is misfiring.
Sometimes I have these strange little moments where like my hand will make a fist and I can't open it.
Sometimes I wouldn't be able to speak, I'd have no thoughts, no words.
(making noises)
I would be sensitive to light and the slightest sound could cause excruciating pain.
(loud whirl of fan)
Omar : I'm gonna stop recording.
Jennifer : No, don't.
It's fine.
Omar : This is perhaps the least chivalrous thing I've ever done in my life.
Okay I'm gonna rest here for a minute.
It happened all of a sudden. I don't know...
it's like someone turned off the lights or something.
♪ (tense orchestral music builds)
Jennifer : I saw every kind of specialist.
Infectious disease doctors, endocrinologists, cardiologists, and finally a neurologist.
My neurologist diagnosed me with conversion disorder.
He said that all of my symptoms, even the fever, the infection for which I took antibiotics
were being caused by some distant trauma I might not even be able to remember.
Either that or I was just really stressed out about my final exams.
(birds chirping)
(water lapping)
(wind rustling trees)
(birds chirping)
For the next several years I spent most of my time bedridden.
I thought maybe I had a rare disease.
Maybe I was dying.
And then I went online and found thousands of other people all over the world just like me.
Yeah I'm completely bed ridden. I have lost the ability to walk.
I crawl from my bed to my bathroom and I just think, "this s my life. What a shit hole!"
It's the cognitive problems that are the most disabling.
I live in a dark room twenty-four seven.
I have ME/CFS.
That's Chronic Fatigue Syndrome
or Myalgic Encephalomyelitis I think is the term that you're supposed to use now.
I've have some kind of ME/CFS for about eight years now.
I was ten years old when I first got sick.
I was a really competitive skier.
At one point I was ranked seventeenth on the entire East Coast for mogul skiing.
This is the couch. These three cushions are where I spend my life.
And out there that's that's all my old life.
Larry King : The Chronic Fatigue Syndrome.
It's been called the Yuppie Flu, Epstein Barr, and a living hell by those who suffer from it.
There's still no adequate medical explanation for it. The experts say it could be triggered by viruses.
We all get tired but is it Chronic Fatigue Syndrome? Some believe that's a made up condition.
You have Chronic Fatigue ME.
You're in that percentage of people who are severely disabled.
Based on your duration of illness you are still in that category that we call in sort of the acute phase.
And the CDC statistic's that if you've been sick five years you're unlikely to recover. I agree with that statistic.
People reach a plateau of function that's better than they were at baseline
but not that they have a full recovery.
(glasses clinking)
I had no idea if it would be months
or years
or decades.
It was like I had died, but was forced to watch as the world moved on.
(children playing in distance)
If I completely disappear and I'm in this bed and I can do nothing
then it's like I don't even exist or that I never existed.
And then what was the point of it all? Of being born in the first place?
You know and honestly there are a lot of days when I just feel like I'm doing a good job
by just holding it together and not killing myself.
Like I'm really proud of that.
And it's not... I really don't want to die. Like I really don't want to die.
But at a certain point it's hard to call this living and...
I think the grief of all those things I might not do or see or have or...
(moaning)
(sighing)
Yeah so it's sad.
(ringing)
Hey Jen.
Hi.
Welcome to My World of One Room.
I have been severely unwell for eight years.
Jennifer : I found Jessica online.
She was so young and had lost so much.
Yet somehow, she found a way to keep going.
So I asked if I could film her
I mean, if we have to do it ten minutes at a time over like many days, we'll get there.
Yeah.
♪ Happy birthday to you, Happy birthday to you ♪
♪ Happy birthday dear Jessica, Happy birthday to you ♪♪
(laughing)
- Come on, come on. (blowing) - Excellent.
Jessica : I get to my birthday and for me, that's a really difficult date
because I think it's another year in bed.
I need your help.
(paper ripping)
Too loud.
I remember my sixteenth birthday in bed.
I remember my seventeenth, eighteenth, nineteenth, twentieth, twenty-first.
Pretty. Look.
I made it into a chair for a couple of seconds for my twenty-second but other than that I was in bed.
You need your injection, don't you.
Injection mid-champagne.
Mid-champagne.
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?
The everyday joy.
(laughter)
Happy birthday.
Have some champagne, dear.
♪ (slow piano music plays)
Jessica : When I was fourteen I suffered with a flu-like virus.
I was sleeping all through school and I had the teacher shouting at me saying, "Jessica! Pull your head off that table."
I remained in hospital for four years constantly.
I was in a semi-coma.
The doctors had no idea what to do.
The nurses were getting frustrated at me for not getting better.
They almost saw me as a lost cause.
I'm very lucky to have a sister like you.
You can't do makeup. Open.
That'll do.
I think it will.
(laughter)
When you were in that hospital
and you couldn't move or speak, how did you stay sane?
I stayed sane because I can do lots of things with my mind
and I go to many different places all over the world in my mind.
(seagulls cawing)
I love Australia because I love the water and I'd love to go scuba diving there.
As I jump into the water and have that freedom of my body moving but there being no sound
and a multitude of different colors of fish calm you down and relax you.
It becomes more and more magical and still there's that silence.
(zipper unzipping)
(straps tightening)
(grunting and laughing)
Awkward!
Jessica : I suffer with severe osteoporosis now because I've been bedridden for so long with ME.
So I have the bones of a hundred-year-old.
I'm quite a tall girl. I've actually grown four inches in the time I've been bedridden.
So I've never actually stood up at this height.
About a month ago I touched the floor for the first time.
You alright? Feet on the ground?
Feet on the ground.
(sighing)
How's that?
It's mental. Oh my goodness.
When did you last do this?
Not for about probably for eight years.
Eight years.
And you sat on the bed with Tom didn't you?
Yeah but it didn't go like this.
Stand on your feet.
(sharp breath)
Sleepy? Okay, come down my girl.
(rustling)
- Hi! - Hi, how's it going?
New video is starting. There you are.
I started filming more and more people all over the world from my bed.
Camera speeds!
Who am I going to be looking at?
Oh you're looking at this camera right there.
(speaking foreign language)
I found out that my disease isn't rare at all.
A million people in the US have it.
(speaking Arabic)
Seventeen million around the world.
(speaking Spanish)
That means it's twice as common as multiple sclerosis.
Like MS, it's a spectrum disorder.
I know people who can work and you'd never know from looking at them that they were sick.
Who can walk a mile, but have cognitive problems.
A quarter of us are homebound or bedridden.
Saw someone collecting the other day for ME.
That's the one where "I don't feel like going to work today."
(audience laughing)
Chronic fatigue syndrome. Yeah, I'm tired too.
(laughing)
Jen? Jen?
Okay, let's lay down.
So Jen is calling in. Can you see?
Jen?
Hey! There you are. You look comfy.
Nancy, one. Take one. Mark.
(slate clapping)
I'm Nancy Klimas. I'm a clinical Immunologist which is the study of the immune systems.
Clinical Immunology's a kind of a very small specialty.
There aren't many people around that do clinical immunology.
I was one of a kind. I was the only immunologist at my university.
The year was '84, that was the year HIV hit the scene big time.
My practice was people without HIV but people who didn't make antibody,
people that were getting sick without explanation.
A patient came in to see me and she had been brutalized by the health care system.
She was terribly ill, she was profoundly fatigued.
She'd been put on antidepressants without any depression.
She'd been put on antipsychotics without any mental illness whatsoever.
It was like shocking.
So I was listening to her. She was just telling me this story.
She says, "if you would just at least look at my immune system and see if there's something wrong."
We had this amazing laboratory that could look at all kinds of parts of the immune system.
So I put her through the whole nine yards.
Everything we knew who had to do with the time. And I came back to four weeks later
and I said I'm sorry to say that there's something terribly wrong with your immune system.
The cells that are antiviral just don't do much in culture that can't kill all the virally infected targets
you're making all kinds of inflammatory cytokines.
This is a sick immune system. Well she burst into tears and I thought, oh my god.
You know? Poor thing. I'm such an idiot I mean I must've said this wrong.
I should have broken it to her... well she was crying with joy. It was joyful tears
because she had been told by everyone there was absolutely nothing wrong with her; it had to be in her head.
And I was telling her there was something terribly wrong with her
and she was thrilled, happy, joyful because it wasn't in her head.
So then this word of mouth thing happened.
And I had about twenty-five patients and I did the same work up and there was a consistent look.
♪ (probing violin and xylophone music)
So we published a paper that said that there was a natural killer cell deficiency.
These cells that are antiviral couldn't kill viruses.
This illness appeared to be a form of an acquired immune deficiency.
Now if you go back historically, you can see illnesses very similar to this called many different things.
♪ (music swells)
Over the last century, there have been roughly seventy outbreaks of a strikingly similar disease.
In each case, often following an outbreak of a virus like Epstein Barr or coxsackie,
a small percentage of people never seem to get better.
For a long time, it was seen as a new form of polio.
And later, encephalomyelitis, which means inflammation of the brain and spinal cord
until an outbreak in the 1980s when it was given a new name.
A mystery disease has struck the town of Incline Village, Nevada.
A disease for which doctors have no cure.
Doctors have diagnosed more than two hundred cases of the same illness in this area.
In all of my years of training and practice, I've never seen anything quite like this.
She's talking out of the lens? Okay.
Jennifer : Do you remember the beginning of the outbreak
of what would later come to be called Chronic Fatigue Syndrome?
I can recall to this day those moments.
One was an epidemic of apparent mono in a girl's basketball team.
And by July, August we had over two hundred cases of adult viral-like syndrome.
It wasn't that fact they were showing up sick, it was the fact that they remained sick as the years went by.
They not only remained sick, their sickness actually evolved into something different than it was at the beginning.
Now they were complaining of severe and debilitating fatigue.
They began to complain of strange cognitive complaints.
We were certain we were looking at something that we have never ever heard of before
and began thinking about asking for help.
Jennifer : When the CDC came out to investigate, they looked at patient's charts,
they noted that all of their lab results were normal, and then they went skiing.
Doctor William Reeves, that man in charge of investigating Chronic Fatigue for the CDC,
told us over the phone that one, there is no viral cause for this problem,
two, there are no immune system abnormalities in patients with Chronic Fatigue.
And three, there are no clusters. So when asked about the illness at Lake Tahoe, he said that was hysteria.
I was two during the Incline Village outbreak.
Thirty years later we don't seem any closer.
We know that ME can be triggered by viruses and bacterial infections.
But we don't know if the infection hides in places where it's hard to measure, like the brain.
Or if it's long gone but leaves in its wake an autoimmune disease.
There are now a handful of specialists, but most patients will never get to see one.
I was lucky.
My doctor prescribed me an antiviral drug called Valcyte.
Two days later I was walking again.
(birds chirping)
Hello!
You alright?
I'm good. I'm doing awesome!
♪ (marching band plays)
Hey, how are you doing?
Congratulations!
(crowd cheering)
Thirty-five!
(crowd chanting)
(car horn honking)
(shouting)
♪ (bagpipes playing)
I'm sorry please don't.
Oh god.
I'll get you some magnesium.
Stop! I can't.
I could feel everything in my head swelling pushing out my eyeballs.
(crying out in pain)
I would try to speak and the sounds that would come out of my mouth would be gibberish.
(crying out)
I can't understand, love.
It's gonna pass.
Ok.
(trying to speak)
Shh.
How's Jen?
Alright. She's much improved from two hours ago.
You know, I still feel very lucky.
Thank you. And fatherhood?
(laughs)
I can't imagine it any other way.
- Yeah. - Yeah.
There are moments when I see us through other people's eyes
and somehow that's much sadder than when I'm just kind of living our life together.
This is normal for us. Like...
Jennifer : It's so normal.
And it's only when other people observe how not normal it is
that I'm forced to recalibrate
and sit with how hard this is.
You know what it is about being observed? It's that people feel sorry for me.
And I don't know why that....
Jennifer : Baby, I'm so sorry.
It hits a nerve.
He's the guy that first introduced me to email ten years ago.
Technology is not something that is oppositional to black people.
Technology is opportunity.
Jennifer : When I met Omar, I thought here's a guy who's going to change the world.
Another movie, I think I've got one, the forty year old intern.
Now I feel like if he's with me he can't become the person he was meant to be.
I think there's definitely a sense on the internet
that he is the first member of the internet kind of generation to become president.
Omar : What's impossible to capture is just how hard this is day in day out.
It's hard to like go on Facebook and see friends having kids, raising kids.
I just feel like our lives are frozen in this kind of sickness amber.
I can't be anybody's mom like this.
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...
I'm nothing. I can't give you anything.
You're my wife...
I can't give you anything.
...and you bring joy into my life everyday.
(ringing)
Hello?
Hi Jen.
Is it super bright in there? Or how is the light for you?
I usually keep it really dark in here but it's okay.
Daddy, daddy.
Leeray Denton : Before I got sick we just lived, you know, husband and wife.
The wife had dinner ready when the husband came home and the house clean and...
When you first got sick what did your husband think of all this as it was happening?
I saw ten to twelve doctors that told me there was nothing wrong with me.
I think that's maybe when Randy started doubting a little bit about how sick I was.
Oh, you guys.
And all of my husband's family, they just immediately jumped on that.
"Oh, it's something mental. If the doctors can't find something, it must just be in her head."
It's a gun?
Ruger, seven and a half inches. Man. Wow!
Leeray : We were married for fourteen years
and I kind of feel like that's about as much as he could take.
It was really scary when he left.
I was worried about how I was going to cope with everything. How I was going to do everything.
I had some struggles with my faith.
I just felt so alone.
I honestly don't have any friends now. They're gone.
The only people that never questioned me were my children.
Hi Jessica!
I remember Jessica before she had gone to school she would clean the house and vacuum and do all this stuff for me.
So they just kind of took over when he left. They just jumped in there for me.
I missed graduations, I missed ball games. I missed things that mothers don't miss.
But I was with my girls more than anybody I know was with their kids.
Did you see my back bends?
Yes.
Aren't you proud of me?
Yeah, I'm real proud of you!
You know they would come in my room and sit and we'd talk for hours.
That's the most important thing about being a mom is when your kids need you you're there for them.
Go, Casie, go! Go, go, go!
I thought the worst day of my life was when I got diagnosed but it wasn't.
It was when Casie got diagnosed.
That was the worst day of my life.
Casie : I was in denial at first.
I didn't want to think that was even a possibility for me to get what she had.
Probably a good six to seven months after I had been very, very ill I found a neurologist.
And he said, "Well I have good news and bad news."
“The good news is I figured out what you have and it's Chronic Fatigue Syndrome.
"The bad news is there's nothing we can do and you're going to have to go home and wait it out."
“Wait for a cure."
The bubbles swimming in the...
Bubbles. Very good.
Bobbing. Very good.
Annabelle's asked me before, "why are you and Grandma both sick?"
and "what does that mean? Am I gonna get sick?"
I don't think she's scared necessarily but she's definitely asked questions and I don't really have answers.
My dad did not believe my mom was sick he says up until I got sick
but when I got sick I guess it just jolted him into believing wait a second this is real.
Grandma says Hi Annabelle!
I think Casie deals with this disease like she does because she saw how I dealt with it.
And it didn't stop me from being mom.
Can you see? My arms are getting tired. Can you still see it?
Having kids with this would be the hardest thing you ever do
and it would be the best thing that you'd ever do.
You'd be a great mom.
(chirps)
You're like an hour old.
Jennifer : I was starting to see that maybe we didn't have to let go of everything we'd hoped for and wanted.
But I still had so many basic questions.
If we had kids, would it be safe?
Could my son or daughter get what I have?
And I didn't know why so many doctors couldn't answer these basic questions.
Doctors want to know what to do but it's not in the textbooks of medicine.
'What're we supposed to do?' You know
so they have to go the same place you go and google it.
In the United States we're still graduating class after class of medical students
that haven't even heard of this illness and where to even look for its diagnostic criteria.
The name, this Chronic Fatigue Syndrome name, has been part of it.
And let me be a feminist for a moment being a woman is part of it.
Eighty-five percent of the people with this illness are female.
- (heartbeats) - ♪ (foreboding cello piece begins)
Hysteria.
It's an idea as old as written history.
The Egyptians thought it was caused by a wandering womb.
The Greeks blamed sexual deprivation.
Sigmund Freud? Repressed memories.
Some lessons of childhood can become the source of illness which has no discoverable basis in physical condition.
Today what we'd like to do is to demonstrate the mechanism known as conversion reaction.
Our patient is a young woman, she had some rather puzzling symptoms.
We now call hysteria “functional disorder” or “conversion disorder,”
which is what I was originally diagnosed with.
I hear from women all of the time who were later diagnosed with fibromyalgia,
lyme disease, lupus, who were initially told they were hypochondriacs.
80% of autoimmune disease patients are women.
I can't help but wonder if that's why we're disbelieved.
Feelings of more than usual tiredness, nervousness, and discomfort
it suggests emotional difficulties which the patient herself does not understand.
The problem with psychosomatic diagnoses is that they can never be proven.
They are names we give to illnesses when we can't find a biological cause but that doesn't mean there isn't one.
The patient, as you can see, is a rather dependent girl.
A girl who under many circumstances cannot admit to angry feelings.
This is the story we tell until doctors can see our disease from the outside.
MS was called hysterical paralysis right up to the day they invented a CAT scan machine.
Because now we had the capacity to look at the brain and see those great big white spots of demyelination.
So it went from hysterical to real.
♪ (cello and heartbeat music continues)
Jennifer : We used to institutionalize women with hysteria.
It's always tempting to look at the past as something strange and distant,
to say “thank god we know better now.”
But what I could never have imagined, had I not gotten this disease, is that we're still doing this.
♪♪
In Denmark the health authorities do not recognize ME as a physical disease.
They say it is a psychiatric disease.
Karina is only being seen by the psychiatric doctors that took her away from her parents.
She's not been allowed to be seen by any other doctors.
That's where the fight really started.
Jennifer : When I first heard of this story I could hardly believe it.
But I learned that in many countries doctors have been removing severe patients from their homes for decades.
This is their general idea:
your symptoms are being caused by false beliefs you have about your illness.
Your parents indulge these beliefs, and this has kept you sick.
So removing you from their influence is the only way you can get better.
Do you know what you were accused of?
Maybe it's harder to see the harm when it's caused by good intentions.
When my neurologist diagnosed me, he said my symptoms were caused by a distant trauma.
One I might not even remember.
So I walked home in spite of the pain in my legs, the burning in my brain.
My body was screaming but I ignored it because he told me, 'this has no biological cause.'
As soon as I walked through the door I collapsed.
That was the last time I ever walked that far.
I used to be angry
maybe I still am
but I believe my doctor wanted to help.
When medicine has no answers for you, where do you turn?
I have the cure to mother-freaking-chronic fatigue.
♪
I cured my Chronic Fatigue with a high carb vegan diet in three days.
Started eating the good foods, the whole foods.
Balance your chemistry, acid alkaline balance.
Two dietary supplements uh that can really really help.
It's like a space alien.
The lightning process changed my life.
I've been tapping a lot.
I take magnesium every day.
I don't really know what's going on but something I'm taking it feels like it's working.
Of course I would never know what is was I just had five new things in.
Oh, delicious gastro intestinal support.
Jennifer : Yes!
I feel like I'm Betty Flintstone, you know? Like this is some crazy prehistoric dinosaur food.
Whoa!
Though my husband is sort of thinking a little bit about
fecal transplants and up self administered hookworm,
I think even I have certain lines that I at least at this point in time am not quite ready to cross.
It's like the craziest high school science experiment you've ever done.
It's just technical enough to feel like, wow I'm doing something kind of novel and scientific.
So, the goal is to basically stun the worms and they drop out of your gut.
A few months ago I started avoiding really small amounts of toxic mold
and since then my exercise intolerance has disappeared.
I'm trying to avoid mold at all costs.
There is quite a bit of evidence of toxicity of mold.
I started hearing from more and more people who were seeing huge improvements
by leaving their homes and going to drier climates.
Omar : Will strategically reducing my mold exposure make me a better lover?
Are you okay with this?
I'm okay with this.
But you think it's gotten a little crazy. This is you letting off a little steam.
There's no way to approach this except as crazy
but just because it's crazy doesn't mean it's wrong... but there's no doubt that it's crazy.
I know.
- Jennifer : Love, I'm walking! - Omar : Yeah.
- On the path! - Omar : Yeah. - Like, just 'cause... it's...
Easy trigger.
You gotta come back up that. Don't... don't
Omar : What can I do?
Outside.
Feeling better?
A little. I know this seems really hard and I mean it is but like
just think of the gift that we live here and that there's space.
How is that a gift if it makes you sick?
You know it doesn't just touch clothes, it doesn't just touch the car,
it doesn't just touch the house, it doesn't just touch like where we live.
Like it potentially touches every aspect of our lives and that's scary to me.
If you could have the signals that I have for like an hour, I feel like everything would change.
Right, and conversely, if you lived with this total absence of these signals you would feel insane
every time you are making some great adjustment in your life for something that is...
You can't see or touch or taste or experience. Totally invisible.
Definitely do not go inside.
Okay, you see...
Or get too close honestly.
That's an impossible request to not get too close to it.
Well I mean I'm saying you could like be wearing mold free clothes when you're around the tent.
Why don't I take off all my clothes?
- Yeah, do that! - So there's a hook. There's a hook here. - I'm trying to be serious, love.
And I'm trying to be serious. There's no way for me to not touch the tent and assemble the tent.
I think what I'm trying to say is that I realize being in mold free clothes
is probably better for interacting with our home.
Would you mind changing?
Into what? Like these were mold free. You sniffed these. These were mold free.
Yeah, but you went inside the house.
I don't want you to change into mold free clothes.
I wanted you to change to clothes you can wear in the house.
I cannot change clothes every time I walk in and outside the house. That is, that is...
In our new house or my new house at least
you have to be very careful otherwise you have to buy this tent and do it all over again which is kind of silly.
What do you want me to do right now?
I think you should probably shower and put on new clothes.
Okay. Well then you're on your own for now.
I really don't make the rules.
You have to appreciate it feels insane.
Like I changed my clothes an hour ago. Now I'm changing them again.
It's a little maddening. I'll just avoid you like I'm the plague.
I used to think if I looked hard enough I was going to find a cure
and I have found a lot of things that have helped.
The antivirals, mold avoidance, even some of the supplements;
but I'm not going to figure this out on my own.
Inside every cell there's there's your energy making machine. It's called the mitochondria.
So in this illness, each individual cell can have real problems capturing the
things they need that your body uses to make energy like oxygen and glucose.
At a cellular level you become less and less effective like a wound down clock.
Jennifer : If our neurons don't have enough energy we can't think.
If our immune cells don't have enough energy we can't fight viruses.
And if our muscles don't have enough energy we can't move.
But where you can really see it is when we crash after physical or mental exertion.
Our cells give out and all of our symptoms flare.
Dr. Klimas's team can actually track this crash point on a metabolic level.
Dr. Klimas : There's two different kinds of energy.
There's aerobic energy and there's anaerobic energy that you get from the cell itself.
We teach people how to stay in that tiny little space of aerobic. And it is little.
Sometimes it's two minutes, sometimes it's three minutes of effort.
You can safely operate in this space without crashing.
The minute that you go into the anaerobic space and you ask the cells to make energy
you're in big trouble because you don't have it.
Jennifer : I think this is half the reason this disease is so hard to understand.
Why someone like me can be walking one moment and look completely normal
and then a few hours later crash in bed for days.
I feel like I'm this broken battery that's stuck at 10%.
And when we crash, we disappear, so you never see us at our worst.
I was amazed to find out how many questions we've never really asked.
Why do more women get it?
Is it genetic?
And why thirty years into it are we still no closer to a cure?
Hey, how are you doing?
Oh, good. This is kind of amazing type of interview. Yeah.
You've spent your life tackling really hard problems.
Why has it been so hard to figure out what's going on in patients like me?
What's usually hard about a problem is that you often have to take
a very different perspective than what is conventional.
I look on trying to figure out if CFS as one of the most difficult things
I've ever tried to tackle.
CFS is an extremely complicated disease involving the immune system
and the brain and who knows what else.
We're studying a very small population of severely ill patients
and we're collecting billions of data points on each patient.
We're probably collecting more data on an individual
than has ever been collected for any disease in history.
I've teamed up with really superb scientists. Three of them have a Nobel Prize.
In two/three months we'll have some data to sit at the table and look at... not publish...
just you know some of the data to look at. That would be real.
Almost exclusively the organization that funds medical research
is the National Institutes of Health.
Chronic Fatigue Syndrome is the lowest funded of any major disease by a lot.
Many of the people that are at NIH and have in the past not believed it's real.
So why would you fund something that's not real?
I've written two applications to the National Institutes of Health.
Both of them were turned down without review.
We have to attempt every door at NIH.
If we get shut out from every door then the only recourse we have is go to Congress.
This is what's called TPN: total peripheral nutrition.
And that's all he gets for food.
The speech center gets affected.
It's probably been a year since he's talked.
He loved traveling and taking photographs.
One day he asked us to take his camera out of his room.
And then he motioned for me to let him hold it for a minute.
And he just hugged his camera and then told it goodbye and I took it out of the room.
He was my best friend.
It's hard to find somebody that knows you like your sibling does when you're close like that.
♪ (Doo-wop)
Janet : March 26th, 1990.
♪♪
I got to try to rewrite this grant and put it in again.
Janet : I just found myself getting pissed off.
All these people are clamoring for funding and they tell you no for the stupidest reasons.
I think they'll come around. I just worry how long it's going to take to come around.
Janet : Well maybe we should tell them we'd like them to come around before our son is dead.
Yes.
Ron : I'm working against the clock.
How much time does he have?
Will it get to the point where some of his organs start shutting down or something like that? I worry about that.
Janet : Sometimes I just dream that that door opens and he walks out the door.
One of the highest death rate from CFS is suicide,
which really really scares me because I don't want him gone before they figure out a way to help him.
I can't do it for much longer.
I don't...
It's like I'm just watching my life disappear.
I'm watching everybody else grow up and do all the things that people do when they grow up.
I just spend all my life in fucking... in a house watching the world just pass.
Jennifer : We've lost so many people.
I hear stories of other children ripped from their home by police.
I've lost friends to suicide.
I've had friends who were doing okay and then just got worse.
Sickness doesn't terrify me and death doesn't terrify me.
What terrifies me is that you can disappear because someone's telling the wrong story about you.
I feel like that's what's happened to all of us who are living this.
And I remember thinking, there's no one coming to look for me because no one even knows that I went missing.
♪ (soft piano)
All of those things...
Those things, those really simple things.
Not realizing how fragile they were because you never do.
You never do.
That life was gone.
But here I had this new one.
And I had to fight for it.
Hello everyone, welcome! I think we'll probably have more
people joining us um in then next minute or two.
I'm fromthe Netherlands. I'm here with Annette, I think?
Hi, Sebastian, I'm from Hamburg.
In South Africa we're very much behind.
The doctor's really have zero clues, you know, they don't know anything yet.
We're kind of both organizing a day of protest as well as organizing individual protests.
People obviously are going to find it very hard to get to this protest.
I'm not somebody who's ever done protests before. I have no energy to do one.
You can still be out there in... especially if you've got a wheelchair that reclines
but also in a lawn chair...
Jennifer : The only way anything is ever going to change is if people can see us.
(Ren Gill singing "Patience")
♪ It's alright, it's ok, I'm feeling brave gonna face this day ♪
♪ It's ok, it's alright no tears will kiss my cheeks tonight ♪
♪ It's all good, and I'm just fine my words ring out like hollow shells ♪
♪ Should slow down, it takes time but time moves slow I know this well ♪
♪ And my heart breaks one thousand times a day ♪
♪ But for every hope that dies another one takes its place ♪
♪ Because I have the strength of a mountain I've got the courage of the deep blue sea ♪
♪ And I have the heart of a lion and the stars burn bright inside of me ♪
♪ And although you test me my God I stand so proudly can't you see that I have the strength of a mountain ♪
♪ And I'll take all you throw at me ♪
I'm here on behalf of my son Gordon who is 22.
He's been sick since he was twelve.
We're live in Dallas, Texas for Millions Missing for ME CFS.
We're on our way to Millions Missing protest in Lansing. We stayed at the hotel last night.
Hey everybody! We're here in Melbourne, Australia...
If our governments across the world today do not see us, do not take action on this crisis,
then this pattern is due to repeat itself.
♪ I have the strength of a mountain I've got the courage of the deep blue sea ♪
♪ I have the heart of a lion and the stars they burn bright inside of me ♪
♪ And although you test me my God I stand so proudly can't you see ♪
♪ I have the strength of a mountain and I'll take all you throw at me ♪♪
Omar : Every time you do something you love I know you're going to end up paying for it.
All : Thank you!
Omar : But I also know that's what makes you feel alive.
Bye! Nice to see you all!
I know you keep saying not to think of it like this but I just feel like I'm like robbing you
and I'm hurting you and I think that's just really hard and...
Omar : All I can tell you, love, is I am so grateful that you are in my life.
You know if I can talk to you? If I can like hold you tight? I'm good.
Randy : I remember the first time I saw you, you were getting out of the car.
- Your mom was in the car with you. - Leeray : Yeah.
And I thought how cute you were. Wholesome.
Leeray : Randy! Come help. Don't just record you sitting over there.
Randy : When I left I honestly, honestly thought you would get better.
I thought that at this point if I'm gone I'm not a crutch for her
and she'll have to get better because she'll have to.
I felt like if I took care of you guys financially that everything would work out for you guys
and ya'll would wind up being happier.
And I made choices that I regret.
And uh I don't know if there's enough life left in me to make it up to you but I will try.
Jessica : My ME goes up and down.
I spend most days in bed.
Life doesn't just stop because you've got severe ME.
So even though I've been stuck in a room or my parameters are so small, I've still lived.
Is it recording?
Yep. Woo!
Jennifer : Before I got sick, every book I read, every movie I saw said,
"when you fall ill, either you will find the cure or die trying."
It always ends in triumph or tragedy
But that's not my story.
At least not yet.
- Jennifer can you hear me? - Yeah I can.
Alright can you see a framing? Alright, I'm rolling.
There's the sun.
♪ (quiet, striving symphony begins)
And somehow it's almost as good as actually being there.
This is so beautiful.
This is incredible. I don't even...
You have to be able to hold two things in your head.
This illness destroyed my life.
But what it showed me, I could never give that back.
I want to be well. I want to wake up tomorrow and be well.
And yet I am grateful for every inch of my life.
I am still here. I am still here.
(Lhasa de Sela sings “Love Came Here")
♪ There is no end to this story ♪
♪ No final blow or glory ♪
♪ Love came here and never left ♪
♪ Now that my heart is open ♪
♪ It can be closed or broken ♪
♪ Love came here and never left ♪
♪ Now I have to live with loving you forever ♪
What are you doing?