Illuminating an illness without end: Fellows Friday with Jennifer Brea

Three years ago, Jennifer Brea, then a PhD student in political science, was struck down by what appeared to be a severe flu. It turned out to be the beginning of a long illness — including neurological dysfunction and extreme exhaustion — that she has yet to recover from. Discovering that the medical community did not recognize her illness and worse, dismissed it as hysteria, Brea did her own research and discovered that there is a name for what she was experiencing: myalgic encephalomyelitis (ME), a devastating, misunderstood and ignored disease affecting millions.

To call attention to the plight of those suffering from ME, Brea is making a film, titled Canary in a Coal Mine, to offer firsthand insight into what it feels like to live with this debilitating disease. Its Kickstarter campaign, launched just days ago, has already almost met its target, a clear indication that the time for this film has come. Here, Brea tells the TED Blog her story.

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In took 3 days + 5 hours

WE DID IT!!!! We reached our first goal in just over THREE DAYS. Amazing! We are so awed and inspired by all of you, the faith you have put in us, and the energy you have given this project. We feel like nothing can stop us now. This is our moment, the moment that YOU made possible and we are just so humbled by the power of your love and generosity.

We're going to keep pushing, keep sharing, keep spreading until we reach our goal of $200,000 and 6,509 backers.

With your help, we can get here. With your help, we can go anywhere.

http://j.mp/canarykickstarter

Quote from @jenbrea (with #ME) who is making @canaryfilm ------ "I had this sense that the clock had... pic.twitter.com/P4miB7TvWa

— Tom Kindlon (@TomKindlon)

October 26, 2013

What the community is saying about Canary in a Coal Mine

A selection of responses from Facebook, Twitter, YouTube and our Kickstarter page

Kickstarter Update #1

Dear #canaries, #spoonies, #MEAllies and everyone who has supported and shared this project: 

We have raised over $20,000 in the less than 24 hours since our Kickstarter campaign launched yesterday! You have left us humbled, grateful, and (almost) speechless. And as you've shared your stories with us, and what this film means to you...let's just say, I probably cried five times yesterday, and we still have 30 days to go.

$50,000 gets us to a film that we're proud of. But if we want a shot at making a film that will change the way the world see M.E.--forever--we've got to aim for a professional, feature-length documentary film budget. 

But first, let's get to $50K! 

How do we do that? Share, share, share! http://www.canaryinacoalminemovie.com/share/

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Why encounters with the world outside are bittersweet

OK, so we've got to admit this shot was not entirely...candid. It was taken one evening while some good friends from our old lives were visiting. It was a wonderful evening and a wonderful weekend, but it was also bittersweet.

Since getting sick, to keep feeling as well as possible, I strictly control my environment. My life has become a fraction of the size it used to be.

When old friends bring with them all their joy and bustle, it can almost be worse than the isolation. They have kept moving forward. They travel to exotic places, get new jobs, make babies. When asked your age, you hesitate: for a moment, you've lost track of how much time has passed. Your first instinct might be to blurt out the age you were when all this started.

When you are alone or with the people who live this alongside you, it's easy to forget just how circumscribed your life has become. My world is my bed, my couch, the shortest distance to the kitchen, the bathroom. (And that's a whole lot bigger than it used to be!)

Which is not to say it can't still be a good life. Just a very different one.
Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing one still from the movie (or behind the scenes) a day. Spread the word! Help us change the face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome") 

http://www.canaryinacoalminefilm.com/
http://fb.com/canaryfilm
http://twitter.com/canaryfilm
http://j.mp/canaryYouTube

The power of branding: how the history of Myalgic Encephalomyelitis was effaced

In the mid-1980s, immunologist Nancy Klimas was, with her co-authors, the first to publish results that showed decreased natural killer cell function in a cluster of patients in Florida. They had what seemed to be a new, unknown, unnamed disease.

Researchers began to note the same finding in other clusters around the country. In 1988, the CDC proposed to name that disease Chronic Fatigue Syndrome, completely unaware that it had a much older genealogy, with outbreaks dating back to at least the 1930s, and an internationally recognized name: Myalgic Encephalomyelitis.

Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing one still from the movie (or behind the scenes) a day. Spread the word! Help us change the face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome") 

http://www.canaryinacoalminefilm.com/
http://fb.com/canaryfilm
http://twitter.com/canaryfilm
http://j.mp/canaryYouTube