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Canary In a Coal Mine Kickstarter Appeal

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    Affects one million people in the United States.
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    Less than half the doctors in this country know the name of this illness.
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    I don't know of another illness like that.
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    This is probably the craziest story I have ever heard of in my life.
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    It was what should have been the happiest moment of my life. I was engaged to the love of my life.
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    I was a PhD student at Harvard. And then...WHAM! I had a hundred-and-five-degree-fever which lasted for 10 days.
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    The doctor had said to me, "Everything you're feeling is in your head."
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    I had a blackout. When I came to I couldn't read a word.
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    I disappeared entirely and know one knew why.
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    Among the people who haven't a clue was me.
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    Except for the doctors, nobody doubted I was really sick.
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    It's a story that you need to see to believe.
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    Are you tired all the time? Tired. Tired all the time. I just slept all the time.
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    Why am I so darn tired all the time?
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    Chronic Fatigue Sundrome.
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    Chronic Fatigue Syndrome. Chronic Fatigue Syndrome.
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    La Fatigue Chronique. Chronic Fatigue Syndrome?
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    No, that can't be right. You're too sick.
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    Hi. I'm Jennifer Brea. I'm Kiran Chitanvis.
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    And this is our Kickstarter Campaign for Canary In A Coal Mine,
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    a film that takes a look into the lives of people living with one of the world's
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    most misunderstood diseases - Myalgic Encephalomyelitis.
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    It's a disease suffered by a subset of people diagnosed each year with Chronic Fatigue Syndrome.
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    Had I not become ill with M.E. three years ago, I would have never believed the story
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    was possible. In order to make this film, we need your help. Take a look.
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    I was at a Chinese restaurant with some friends and when the check came
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    I couldn't sign my name. My brain was burning.
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    He said maybe I was stressed or depressed or sad or
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    most implausibly that I wanted to be sick.
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    We doctors are the most arrogant of professionals.
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    I've got the answer right here, ladies and gentlemen.
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    To everything that ails you!
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    We just don't have doctors going to guys and saying if you would change the color of your hair, you would feel better.
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    If you could, you know, get a younger wife, you would feel better.
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    Ones gotta insist that this is a physical disease, that this is not a psychiatric disease.
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    It's an acquired form of an immunodeficiency disorder.
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    If you go back historically, you can see illnesses very similar to this called
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    many different things. Toxins can insidiously creep in to every aspect of our
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    lives, flipping certain individuals who've might otherwise be resistant to an
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    infection. The severity of the illness is equivalent to
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    congestive heart failure. We think that there is very very likely to be some
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    sort of infectious culprit. It was just a
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    group of people, a committee that happened to be pulled together by the CDC that came up with this perfectly
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    horrid name, Chronic Fatigue Syndrome.
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    I was frustrated and normally I would write
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    in a journal to process my experience but I
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    had lost the ability to write, and so that's why I started filming these video
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    diaries, and it was really just a personal space to process what I was feeling
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    and to sort of deal with some of that anger
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    of no one knows what's wrong with me,
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    no one has a treatment for me
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    and everything that I love and care about
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    is slipping away.
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    You might saying to yourself, if I really couldn't
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    stand up, why would I be filming it? Well, I kind of
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    think that someone should see this.
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    As I dug deeper, I realized that my symptoms
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    followed a pattern and that there were millions
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    of people around the world who had my disease
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    As I shared my story on facebook, old friends
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    from college and high school sort of coming
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    out of the woodwork to share their stories.
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    They didn't have M.E. but they had other
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    chronic illnesses, auto immune diseases and
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    I started to realize that, you know, this is actually
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    a universal story. Our approach in making
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    this film is to give the audience a really
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    subjective view into the lives of people
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    with this disease. What we really want to do
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    is to bring the audience in and to make people
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    feel for the first time what it's like to
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    live with this devastating illness. It's just beyond any words.
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    The participants in the film are doing a lot
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    of self-filmed footage and it really gives
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    you a visceral view into their lives in a
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    way that you would never get by bringing a
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    film crew into somebody else's house.
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    Taking on a project like this is completely insane.
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    It's difficult to travel everytime we go,
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    you know, one hour from Princeton to New York, we
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    have to pack all of my own food. It's like
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    there's more gear for to take care of me than
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    there is like camera gear we're packing in the car
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    for the shoot. She conducts the interviews for most of the shoots
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    from a different room and conducts them over skype
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    through a teleprompter.
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    I can interview people whether I'm in the next room or at home in bed and, you know,
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    there's a crew halfway around the world shooting.
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    In addition to a few, new technological things we're gonna be trying out.
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    Some tricks up our sleeves. Got a few tricks.
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    The diagnosis of M.E. is really in a place
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    where something like epilepsy or multiple
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    sclerosis was a hundred to even thirty years ago.
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    And how many more diseases will this happen to unless our approach changes.
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    There's $16 million dollars in male-pattern baldness
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    and we got $3 million bucks going to Chronic Fatigue Syndrome.
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    My husband has asked me, you know, "Jen, what do you care more about, your health or this film?"
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    There's no way we're gonna go into the mall and show our numbers.
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    We can't even walk to the mailbox." (laughing)
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    Even though we often feel like, whatever it is that we are grappling with, no one
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    else can understand the fact is that we will
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    all have that experience of coming across an
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    obstacle that feels insurmountable.
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    There was a future you take for granted everyday
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    and never articulate to yourself and yet
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    it's always there and when you come down
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    with an illness that has no end, it strips
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    away that idea of a future.
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    When we're in that moment that everything
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    changes, how do we react?
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    When I got sick, he took care of me.
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    But I'd rather carry you around all my life than have anything happen to you.
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    We kept saying, you know, don't get discouraged, you never know what's around
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    the corner. Things can change.
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    I have this belief that if I can read a lot of science
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    and do a lot of self-experimentation that I can turn this
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    thing around. We believe in this story and
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    we're gonna do everything we can to see this
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    film happen. Yes, we would hope to be taken as seriously as male-pattern baldness
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    but I am not looking for any miracles here.
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    No one can promise a cure but one very important step towards that goal is
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    visibility. There are things that could be
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    happening today that would improve the lives
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    of patients with living with M.E. Visibility means more
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    research. It means not having to wait 5
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    years for a diagnosis. Visibility means not having doctors give you advice that
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    can cause you harm. Visibility means that people with
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    M.E. would no longer be forcibly institutionalized because
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    their doctor that has never heard of their disease.
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    Right now, to most of the world, we are invisible.
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    Fifty Thousand dollars is what we need to
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    make it through the completion of production and have a film that we're really proud of but to make the
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    film that we dream of, that's just the beginning.
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    And we're going to need a lot of help to get there.
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    Kickstarter is an all-or-nothing campaign
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    and if we don't reach our funding goal, then
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    we don't get to keep any of what we have raised.
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    Up to this point, we've shot about a week's
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    worth of footage and just imagine what we
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    could do with the funds to shoot four weeks, six weeks, and to do it not just
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    in the New Jersey-New York area but around the world.
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    We want this film to have such an impact that I could walk up to anyone on the street
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    and say, "Hi! I'm Jen and I have Myalgic Encephalomyelitis"
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    and they would actually know what the f@#$ that was.
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    Go to our Kickstarter page, check out the link and make a donation to the film.
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    You can also follow us on Twitter or Facebook
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    or even just pass along either the Kickstarter link, the Facebook Page or the Twitter handle
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    or preferably all of the above. Or all the above!!!
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    The biggest way you can help us is by
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    spreading the word and then scroll down
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    and check out some of our other video
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    as well as the awesome rewards by writers and
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    artists who are also living with M.E.
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    Join us on our mission to give a true face
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    to this disease that's so misunderstood.
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    Most of us look at what's around us and see
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    very little and yet we have the capacity to
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    see infinity in the smallest of things.
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    This is our life and everyday we're just so grateful for it.
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    Plus you learn from everything you survive.
Title:
Canary In a Coal Mine Kickstarter Appeal
Description:

http://j.mp/canarykickstarter

We're raising money on Kickstarter RIGHT NOW to fund production of this important film. We want to change the stories we tell about Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome")--forever. We want to show the true face of this disease.

How can you help? Share, share, share!

Then follow us at:

http://fb.com/canaryfilm
http://twitter.com/canaryfilm

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Video Language:
English
Duration:
09:38

English subtitles

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