Thursday, November 14, 2013

@TEDFellow Takeover

@jenbrea is taking over the TED Fellows Twitter account next week (https://twitter.com/TEDFellow). It's followed by about 12,000 people passionate about TED. I'd love to use it as a chance to highlight links to media (video, photo, text) not just about ME, but all the issues surrounding and the concepts and trends that cut across communities.

Please post your suggestions here!

Trends:
- The rise of chronic illness (esp. illnesses of immune dysregulation)
- The Quantified Self
- Personalized medicine
- Participatory medicine
- Pathophysiology that might cut across diseases (e.g., altered microbiome, mitochondrial dysfunction, autonomic dysfunction)

Some themes to consider:
- History of medicine
- Gender & medicine
- Politics of health & healthcare
- Insurance, disability, earning a living
- Psychiatry v. neurology
- Medicine v. science- Forced psychiatric institutionalization (historic and contemporary)
- Famous or historical figures with ME
- Anything nerdy (but written up in popular science) about the possible causes of ME: viruses and methods to detect them, environment illness, genetics, Epidemic of Absence
- Personal stories, blogs
- Art or music
- Favorite quotes from essays or books you have read – someone recently mentioned Susan Sontag and Virginia Woolf – that you think might apply to the story of ME

The list goes on...
Hints:

Think about what might appeal to a general audience and not require a lot of background knowledge to interpret. So for example, I will not be tweeting the ICC and I will probably not be tweeting any medical studies.

Try to abstract from the specifics of our disease and think about the broader themes or analogies that might help the uninitiated better understand the situation this patient community finds itself it in.

Join our Thunderclap

TEN DAYS TO GO!
KICK OFF OUR LAST WEEK WITH A THUNDERCLAP

We are organizing a Thunderclap to energize the last week of our Kickstarter campaign, and we need your help!
You can read more and sign up here: http://j.mp/canarythunder
If you've never heard of Thunderclap, it is a tool that allows charities or causes to amplify a specific message by organizing hundreds of people to share that message with their social networks at a single, common moment.
Like Kickstarter, Thunderclap is all or nothing. We need at least 500 people to sign up to share our message on Twitter or Facebook before Tuesday, November 19th, at 1pm ET., or the message won't be sent.

Wednesday, November 6, 2013

Canary is a Paley DocPitch Finalist!

We are thrilled to announce that Canary in a Coal Mine has been selected as one of five finalists in the Paley DocPitch Competition.
What does this mean? On November 16th, we'll get a chance to pitch our film to a committee of executives from USA, A&E, MTV, History, PBS (POV), and an audience of professionals in film and television, gathered at The Paley Center for Media.
The winner receives $5,000 for their film as well as mentorship. While we are a long way from having a finished film to sell, it's a wonderful opportunity to bring the project before a group of filmmakers and industry experts, get early feedback, and build relationships.
So now for the big question: what should we mention in our pitch?
Jen & Kiran

New trailer and more than halfway there!

Dear Backers,
Thank you, everyone, for all of the energy and momentum you have given this film. We have been so moved by your emails, messages, and comments. With your help, in just ten days, we have raised over $100,000 for the production of Canary in a Coal Mine.
We could not have done it without you. All the watching, giving, spreading and sharing of http://j.mp/canarykickstarter made this possible. We are deeply touched by your generosity, your enthusiasm and the trust you have put in us!
We have 18 more days to reach our $200,000 goal. Over the next two weeks we'll be releasing short video clips, all about a minute or so in length. The first is an 80-second trailer and we'd like to show it to you, first: http://j.mp/canaryB.

If it touches you, please share it with a handful of friends and loved ones. Every new viewer helps to elevate us from “invisibility” and every new donor (even $1!) helps us get closer to producing the full film. With your help, the Kickstarter campaign itself can be a vehicle for raising awareness about ME.
With love and gratitude,
Jen & Kiran

Thursday, October 31, 2013

ABC News: Felled by 'Devastating Disease Doctors Have Never Heard of'

We are thrilled to announce that ABCnews.com has a new piece about Canary in a Coal Mine and the realities of life with Myalgic Encephalomyelitis. It features interviews with Jennifer Brea, Nancy Klimas, and Jessica Taylor.
At the heart of this project is a belief in the unique power of film and media to bring to light the stories of people with otherwise invisible illnesses. This is one of the rare times that Myalgic Encephalomyelitis has been portrayed in American media with that name and with an unblinking focus on how severe this disease can be for many.
Please consider sharing, tweeting, liking, and commenting on the story. We need to let ABC and the world know there's demand for stories like this.

As Dr. Klimas says in the piece: “What's fascinating about the film is the most difficult thing to get across to the medical community is how serious this disease is.”

Together, we can make that change in the world. With your support and generosity, we have raised over $90,000 and are within striking distance of raising $100,000 by tomorrow (Friday)—just ten days after the launch of our campaign.

Thank you again for bringing us so far, so fast!

With love and gratitude,

Jen & Kiran

Wednesday, October 30, 2013

Technology enables disability filmmaking

Many have asked: how can you make a film about M.E. if you are really that sick? Technology helps a lot. With the use of a few common technologies (and the support of an able-bodied crew!) I can direct and interview, even when I am bedridden.



What this video does not explain is that we've been shooting an average of one day a month since February. We can shoot much more if I work from home, but shooting myself, or traveling to New York to shoot others is an intense demand on limited reserves. It usually takes two to three weeks to recover. Pacing in all things.

Making this film has already been life-changing in terms of my perspective on my disability. I am still working hard on getting WELL. But even if that never happens, what this has shown me is that I can still live a full and meaningful, if different, life with an ounce of realism, some modifications, and the gift of the people who love and have stuck by me.

And the north star of a big f'ing dream.

#seeME #mecfs

http://j.mp/canarykickstarter

Saturday, October 26, 2013

WE DID IT!! (In 3 days + 5 hours). Now, help us make history.

WE DID IT!! In just 3 days and 5 hours, we have zoomed past our first Kickstarter goal, raising more than $50,000 for Canary in a Coal Mine. You have absolutely knocked us over with all of your love and support (in Jen's case, literally).
When the news came in, we got a little emotional:

Words cannot equal our gratitude for your generosity. This campaign has invigorated a community that has for so long felt its voices marginalized and ignored. The power and the energy behind this campaign is extraordinary. This is our moment. We are going to do everything we can to tell this message from bigger and bigger platforms, and to make a film that is worthy of the trust you have put in us and the love you have showed. You have inspired us to push harder, to dream bigger.

OUR GOAL: $200,000 and 6509 backers by November 22nd

We will explain more about this on Monday, but here's our big crazy vision: to raise our *entire* film budget with this campaign, and to be the documentary film with the greatest number of backers in the history of Kickstarter. It only takes $1 to write a new story and change the future.
Why 6509 backers? Because we want to win with overwhelming force. That number would put us one man or one woman ahead of the standing record. Whether we're pitching to journalists or courting distributors, we want incontrovertible proof that yes, we exist, we are numerous, and so are the people who love us. There is a passionate audience that wants to see this story told.
How do we get there? Share, share, SHARE.
Much love and more soon,
Jen & Kiran
#seeME #MEally

Illuminating an illness without end: Fellows Friday with Jennifer Brea

Blog_FF_JenniferBrea
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.

Read more

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

Wednesday, October 23, 2013

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/
    1 Comment

    Thursday, October 17, 2013

    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

    Wednesday, October 16, 2013

    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

    Tuesday, October 15, 2013

    Is Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome") ignored because it's a women's disease?



    Women just love us! (Is that part of the problem?)

    Gender breakdown of Canary in a Coal Mine's Facebook page

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

    What I learned from my VO2 max test (that a doctor should have been able to tell me)


    Me (Jen) just before a VO2 max test, a form of self-inflicted torture in which I ride on a stationary bike for three minutes so that I can demonstrate, objectively, that I'm really not meant to do things like ride bikes.

    The data from the test were somewhat useful. Most useful was the overpowering sensation I felt in my brain minutes after concluding the test. I had often described to doctors the feeling that my brain was "dirty." (One of a hundred missed clues!) It was the only word I had for it. What I meant by it was soot and ash dirty--scummed with something that should not be there.

    This was the first time I was able to tie that sensation to exertion, posit that it was caused by a buildup of lactic acid in my brain, and then immediately drink copious amounts of electrolytes. Ordinarily, exertion like that would have sent me reeling for weeks. I did relapse, but it was much shorter and much less severe than it would otherwise have been.

    After this, I started drinking (sugar free) electrolytes prophylactically, one of the many micro-interventions that has led to a better quality of life.

    We all have anecdotes like this, when have an experience and uncover a relationship that leads to an intervention or a strategy no doctor, even some of those most experienced in treating our condition, were likely to advise.

    How long before some of these anecdotes we pass around among each other are turned into avenues for research, so that we don't have to go for years before stumbling onto something that could change our lives?

    How long before doctors stop advising us to exercise?

    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

    Monday, October 14, 2013

    How technology makes disability filmmaking possible



    Director Errol Morris pioneered the use of a technology he called the "Interrotron." (http://www.errolmorris.com/content/eyecontact/interrotron.html.) It uses mirrors to allow the interview subject to make eye contact with the director and look directly into the camera lens at the same time, thereby making direct eye contact with the audience in the finished film. The result is a much more intimate and absorbing connection.

    In this photo I am using what I call a "poor man's Interrotron" to interview Dr. Nancy Klimas. It reflects whatever image is on the iPad, which sit flat in a bed, onto a angled mirror in front of the camera lens.

    While I love the effect of direct eye contact, there's a much more practical reason. First, because of my tachycardia, even if we are both in the same studio, it would be impossible for me to sit on a stool or in a chair and conduct the interview at her eye level. She would be looking down at her feet the whole time, which would be less than ideal!

    Second, and most exciting, is that we used Facetime to project my image onto the iPad. This means that even if I am too ill to shoot on location in Toronto or London or Tokyo or wherever this film might take us, I can still conduct interviews and direct the film--from my bed in New Jersey!

    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

    Sunday, October 13, 2013

    Why remembering the night I cut off all my hair sometimes gets me more than those times when I can't move my hand


    Vanity seems like the least of what we lose when we become ill with M.E. or another other major chronic illness. And yet this was a difficult moment, that day that I (Jen) had to ask my husband to cut off all my hair because I could no longer manage to wash it more the once every one to two weeks.

    It wasn't just the hair. It was the not putting on shoes, or clothes, or makeup. I was newly married, young, and I wanted to stay that way for just a little bit longer.

    Did you, when you first became ill, have it hit you in a mundane moment, that realization that everything from here on out was going to be different?

    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

    Saturday, October 12, 2013

    Doctors who care are doctors who get inspired

    Dr. Derek Enlander, another one of our interview subjects, first came to be interested in ME when a friend of his in Ireland became ill. He wondered how he could have gone to medical school and received all of this training, and never heard of the disease.Fast forward many years later, Dr. Enlander has an ME/CFS practice in New York and treats patients from all over the world. Imagine what would happen if more doctors were similarly inspired?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!http://www.canaryinacoalminefilm.com/http://fb.com/canaryfilmhttp://twitter.com/canaryfilm
    Dr. Derek Enlander, another one of our interview subjects, first came to be interested in myalgic encephalomyelitis when a friend of his in Ireland became ill. He wondered how he could have gone to medical school and received all of this training, and never heard of the disease.

    Fast forward many years later, Dr. Enlander has an ME/CFS practice in New York and treats patients from all over the world. Imagine what would happen if more doctors were similarly inspired?
    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")

    My high-fat diet isn't so crazy

    Our photo of the day is of beef marrow bones. Kiran and I began calling them “operatic marrow bones” because the actual footage, she pushes in on my plate in a way that just cries out for slow motion, and Wagner.  
I (and by that I mean me, Jen) try to eat a nutrient-dense, high fat, low sugar diet to protect my brain and bypass the block in my glucose metabolism that I believe is a major contributor to my symptoms.
Like so many things it helps a lot, but is a far cry from a cure.
Everyone in the film has M.E., but everyone has a different way of coping or attempting to cope with it. That’s an angle I’m eager to dive into! 
**What helps you the most?**
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!
http://www.canaryinacoalminefilm.com/http://fb.com/canaryfilmhttp://twitter.com/canaryfilm
    Our photo of the day is of beef marrow bones. Kiran and I began calling them “operatic marrow bones” because the actual footage, she pushes in on my plate in a way that just cries out for slow motion, and Wagner.  
    I (and by that I mean me, Jen) try to eat a nutrient-dense, high fat, low sugar diet to protect my brain and bypass the block in my glucose metabolism that I believe is a major contributor to my symptoms.
    Like so many things it helps a lot, but is a far cry from a cure.
    Everyone in the film has M.E. (myalgic encephalomyelitis), but everyone has a different way of coping or attempting to cope with it. That’s an angle I’m eager to dive into! 
    **What helps you the most?**

    Thursday, October 10, 2013

    Directing a film when you have M.E. ("Chronic Fatigue Syndrome") is a high wire act

    Me, after shooting part of our appeal, my interview, Nancy Kilmas and Howard Bloom, all in one day. There is a constant tension between my own health and getting the most out of the fixed costs of crew, location, and equipment for a day.
Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing a still from the movie (or behind the scenes) a day. Spread the word!
http://www.canaryinacoalminefilm.com/http://fb.com/canaryfilmhttp://twitter.com/canaryfilm
    Me, after shooting part of our appeal, my interview, Nancy Kilmas and Howard Bloom, all in one day. There is a constant tension between my own health and getting the most out of the fixed costs of crew, location, and equipment for a day.
    Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing a still from the movie (or behind the scenes) a day. Spread the word! Help us change th face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome")


    Wednesday, October 9, 2013

    "There are so many levels of bedridden" when you have M.E.

    Today’s movie still of the day is of Liisa, a woman in Toronto who has been ill for 15 years and bedbound for more than ten.
Of her experience she says that there are “so many levels of bedridden.” There are the people who are “able to go to the washroom or even use a commode beside the bed and then there’s where I’m at.”   
Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing a still from the movie (or behind the scenes) a day. Spread the word!
http://www.canaryinacoalminefilm.com/http://fb.com/canaryfilmhttp://twitter.com/canaryfilm
    Today’s movie still of the day is of Liisa, a woman in Toronto who has been ill for 15 years and bedbound for more than ten.
    Of her experience she says that there are “so many levels of bedridden.” There are the people who are “able to go to the washroom or even use a commode beside the bed and then there’s where I’m at.”   
    Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing a still from the movie (or behind the scenes) a day. Spread the word! Help us change the face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome")

    Tuesday, October 8, 2013

    Emergency rooms are not places for people with ME

    I went to the ER because I could not walk upright or touch my chin to my chest. The doctor was amused. They admitted me, but no one examined me. I was told the brain cannot feel pain. The pain was excruciating. I was told that I could not be experiencing encephalitis or meningitis because I had no fever. I tried to explain that if only my body were capable of throwing a fever, I’d probably feel a lot better. Needless to say, it would take a lot to get me to ever go back to the ER.
This is what it means to have ME and no access to real health care. It means you exist, but not in the minds of doctors, because no one ever taught them how to see you.
Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing a still from the movie (or behind the scenes) a day. Spread the word!
http://www.canaryinacoalminefilm.com/http://fb.com/canaryfilmhttp://twitter.com/canaryfilm
    I went to the ER because I could not walk upright or touch my chin to my chest. The doctor was amused. They admitted me, but no one examined me. I was told the brain cannot feel pain. The pain was excruciating. I was told that I could not be experiencing encephalitis or meningitis because I had no fever. I tried to explain that if only my body were capable of throwing a fever, I’d probably feel a lot better. Needless to say, it would take a lot to get me to ever go back to the ER.
    This is what it means to have ME and no access to real health care. It means you exist, but not in the minds of doctors, because no one ever taught them how to see you.
    Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing a still from the movie (or behind the scenes) a day. Spread the word! Help us change the face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome")