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Canary in a Coalmine – Exclusive interview and film trailer help launch Kickstarter campaign!

Filmmaker Jennifer Brea launches the Kickstarter campaign today with the trailer of her forthcoming documentary Canary in a Coal Mine – a film that will help change the face of ME. Interview and article by Russell Fleming (Firestormm).

Jen after a day of shooting Canary

Jen after a day of filming.
“I will never do a full day of shooting again.”
© Canary in a Coal Mine

When did you first get sick and why did you decide to make a film?

“It started with the worst flu of my life. Then, it progressed into a more markedly neurological disease, starting with a rather scary episode where I was unable to write my own name.

Within a few months, I was bedbound 23.5 to 23.9 hours a day. I could pee on my own, and that was about it. Sometimes I needed a little help with that, too.

I was a Ph.D student at Harvard and had just gotten engaged the previous summer. I was treated abominably by some of my doctors. Others were devoted and worked hard on my case, but no one had any way to help me. I decided to make this film in two pivotal moments.

First, when I read Osler’s Web and learned that I was only two years old when the Incline Village outbreak happened. It was hard for me to wrap my head around the idea that, aside from a small cadre of devoted doctors and scientists, almost my whole life had been squandered when it should have been spent looking for a cure for the disease that would someday change my life.

Second, I watched I Remember ME by Kim Snyder. The film was shot in the late ‘90s, when I was still in high school, and what struck me about it was its optimism, this belief that something better was just around the corner. I think many things have changed for the better: our community is hyper-networked. It can share information and make its voice heard in a way that would have been impossible twenty years ago, and of course there are new and interesting research articles being published every week. There are also new opportunities to find funding and audiences for film.

That said, in terms of my lived experience as a person with ME, I don’t think much has materially changed since 1984, or since 1934 for that matter. Except that in 1934, it was pretty clear that this is a serious disease.”

What makes your film different from similar projects that have asked for funds from our community?

Liisa Canary

Liisa, in Toronto, has been ill for 15 years and bedbound for more than ten.
© Canary in a Coal Mine

“I’d like to think we’re living in a golden age of M.E. film! There’s Ryan Prior’s film, and then there’s What about M.E.?, Voices from the Shadows, and even a Scottish film in pre-production. I think this is very exciting.

When you look at other illnesses, you’ll find dozens of self-help books, histories, memoirs, and films, both fiction and nonfiction, all taking different perspectives. We don’t really have that in our community.

The media we’ve produced is just much, much less. Perhaps it has to do with how sick we are or with the level of cognitive impairment so many of us experience? I was writing a book before I got sick. That’s beyond my capacities now.

As for what niche our film fills: my goal is not to make a film about Myalgic Encephalomyelitis. My goal is to make a film about love, hardship, hope, tragedy, disappointment, faith, forgiveness: the universal themes that extend beyond the specifics of our illness.

We think that no one can understand what we go through unless they also have this illness, too. On a certain level, that’s true. Yet, everyone at some point will face a difficult, confusing, or scary health issue; or it will happen to someone they love; or they will confront some other obstacle that will alter the course of their lives and destroy the image they once had of their personal future. To reach an audience outside of our community, I believe we need to tap into those universal themes.

We learn by telling stories and to quote Danny Cohen of the BBC, we learn by feeling the facts. I want people to walk away from the film thinking not, “That was an interesting story about ME,” in which case, they are unlikely to have seen the film in the first place.

My goal is for people to say, “Wow! That was brilliant, heartbreaking, moving, exhilarating, terrifying.” I want them to know what it’s like to live with M.E., and then to never be able to feel the same way about “Chronic Fatigue Syndrome” again.”

What are your thoughts about the contentions surrounding “CFS” and “ME” as names and definitions?

dr klimas explaining Canary

Dr Nancy Klimas.
© Canary in a Coal Mine

“Myalgic Encephalomyelitis, for me, is a disease that occurs in outbreak and sporadic form, with the first well-documented outbreak occurring at the Los Angeles County Hospital in 1934. That is the disease this film is about.

I don’t know how many people who are diagnosed with Chronic Fatigue Syndrome have that disease: it could be 10%, it could be 90%. However, I know that not everyone who has a CFS diagnosis has the disease that is the basis for our film.

First, the criteria are broad and do not include what I and many others with ME consider to be our cardinal symptoms. Many doctors also use the “Fatigue” part of the name as a shorthand for the existing diagnostic criteria. In other words, they don’t even do a good job of applying the Fukuda definition, as unsatisfying as that definition is.

Second, a very large number of people have contacted me about being cast in the film. While everyone was clearly grappling with a serious health issue, and had lost something precious – a career they loved, a marriage, a sense of self – more than a few described their most pressing symptom as chronic fatigue. That is to say, sleeping a lot or being tired all of the time. That is simply not Myalgic Encephalomyelitis.

In the evolution of my own illness, I began as someone with CFS and came to be someone with ME. Somewhere in the middle, I was telling people I had ME/CFS. This was when I thought ME was just a better name for CFS.

Saying “I have ME” is for many a political statement or a statement about the severity of their illness. ME is a spectrum: that was true in what doctors observed in those early outbreaks and is still true today. For me it’s an issue of clarity. I don’t know how to make a film that tries to cover ME, CFS, MCS, and FM and be able to say much about anything at all.

I don’t take a hardline stance about whether these illness categories are related or what causes them. I agree with Mady Hornig who has said that, “taxonomy is a funny thing.” I like to keep an open mind and in the long run, science will do a better and better job of sorting these things out and showing us what ME has in common (or not) not only with diseases that often get lumped together with ours, but also MS, AIDS, Parkinson’s, diabetes, non-Hodgkins lymphoma, etc. However, if we don’t begin by focusing on a group of patients that are patently self-similar, I don’t know how scientists can do good science, or storytellers can tell a clear story.

All our central patient characters meet the ICC definition for Myalgic Encephalomyelitis. While I am not a doctor, fortunately, casting someone in a film is not the same thing as giving a diagnosis. So folks, when they watch the end product, can judge for themselves whether or not I would make a good diagnostician!

Not all the doctors or scientists we interview will necessarily agree with the ICC definition. Many of the patients will refer to their illness by different names depending on what country they are from, when they were diagnosed, and how much time or not they spend on the internet debating these things.”

What will the film actually contain and how do you think it will help achieve your objective?

Enlander Canary

Dr. Derek Enlander.
© Canary in a Coal Mine

“The film follows the lives of several people with M.E. who all represent different aspects of the experience. We plan to go deep into the stories of those living with this illness and the impact it’s had not only on their lives, but on their relationships, and on the lives of those around them.

Liisa Lugus, Harold Bloom, and Mary Schweitzer are some of the patients we have interviewed so far. We look forward to traveling to the UK to spend time with Jessica Taylor.

We have not finalized casting yet (so there’s still time to pitch your story), and there are a few other possibilities we aren’t quite ready to announce.

That’s not to say there won’t be history, politics and science in the film as well. ME will get its own storyline, with a slate of experts – scientists, doctors, journalists, historians – to help tell that story.

So far we have interviewed Derek Enlander, Mady Hornig and Nancy Klimas. We look forward to interviewing several more experts in the US, Canada and Europe.

Our mantra, though, is to always bring it back to the imperative we have to our audience to tell a good story.”

Given the title of your film do you think environmental causes are to blame?

Canary in a Coal Mine was an instinct rather than the outcome of a long intellectual deliberation. I thought “What the f*** is going on with me? This can’t be right.” And I believed then, as I do now, that if I had spent the first twenty-eight years of my life living up in the mountains or somewhere else pristine, this just would not have happened.

Environmental factors play some role in nearly every disease except, perhaps, in some genetic diseases, so saying that there are environmental factors in ME is not particularly controversial. The controversy is around how much weight to put on those factors.

Our environment has changed profoundly in the last several hundred years, but especially in the last fifty. The world is full of chemical toxins and pollutants. Many of us live our lives, physiologically speaking, in a state of constantly running away from lions. We’ve also stopped eating real food. By that I mean even if we completely avoid processed foods, the organic, whole foods we buy are, on the whole, different and less nutritious than the varieties our recent ancestors ate. Lastly, the diversity and composition of the species of bugs in our bodies have changed dramatically.

Howard slate Canary

Howard Bloom.
© Canary in a Coal Mine

Does that mean that ME is “caused” by mold or pesticides or a high-powered job or a poor diet or too many antibiotics? Of course not. Or at least, not exclusively. The causal story is likely as complex as the disease is itself.

What it does mean is that we are all more vulnerable to diseases that arise as a result of assaults on our immune system. So when we are hit by the virus or one of the viruses that can trigger ME, we are probably more likely to develop ME (or another chronic illness) than we once were.

This is conjecture, but I think not an unreasonable one if you look at the increases in diseases like MS and other autoimmune diseases over the last 60 years.

Now, at this point I have to say it’s a bit complicated answering such questions as both the director and a character in the film. My personal point of view, my point of view as a character, are different from the approach I am taking as a director.

For example, as a character on my own ME journey, taking a holistic approach has been a crucial part of my recovery (or more accurately, my improvement).

However, as a director, I am not seeking to make a film that takes a strong perspective on any single explanation of the disease or one path of treatment. We’re going to be pretty ecumenical on all fronts, and will interview experts with a wide range of views as to the causes, the pathophysiology, and the politics. The patients will also approach their own healing in different ways. I want to represent this community in all its wonderful, messy diversity.

There is another, deeper meaning of the title. And that’s that our community’s history reveals deep flaws in our societies’ approach to medicine and the delivery of healthcare that I think everyone needs to know about. You can’t mess up with a disease this badly and not be making similarly grave errors, or have equally dangerous blind spots, elsewhere.”

Can you tell me something about how you have managed to get this far, and about the Kickstarter campaign?

“So far, this project has been a self-financed labor of love, bootstrapped thanks to Airbnb.

I also have to say here that none of this would be possible without our creative producer, Kiran Chitanvis, who has given so much to this film.

To make a large-scale film with high production values, we need to hire professionals, and professionals need to be paid. The $50,000 we hope to raise through Kickstarter is the minimum we need to shoot a film that would have a big impact and that we would be quite proud of. It would enable us to begin production as planned in early 2014.

Jen Filmmaker Canary

On set with the filmmakers.
Director Jennifer Brea and Creative Producer Kiran Chitanvis.
© Canary in a Coal Mine

It’s a shoestring budget, and if that were all we raised, we could make the film. I would have to edit it myself, and we would have no promotion budget, but we could release it online and I think it would be a wonderful.

In our ideal world, the world I am using all my spoons to make happen, we’d shoot the same number of people, but for more days, make more trips, hire a professional editor, and have the funds we need to really get the film out there in public space. That’s the ultimate goal if we want a real shot at changing the conversation forever.

So you’re really talking about something that is three to four times that. That is probably the largest budget for a film about ME/CFS that has ever been made by some multiple, but I think it’s the budget this story deserves. It is still a modest budget for a feature-length documentary film.

We plan to raise the additional funds by applying for grants and bringing on a small cadre of executive producers.

Our aim for the film is that it will screen at top festivals around the world, perhaps air on cable television, enjoy a limited theatrical release, and live out its retirement on the four major online content distribution sites. I want to go all the way with this project because I believe, profoundly, that this is one of the most compelling stories I have ever heard. I think when the whole world hears it, they will agree.

In short, we are reaching for the moon and intend to go all the way. I hope to convince you that we’re worth the bet you make in supporting our Kickstarter campaign, and that we have what it takes to get there. I am making this film for us, this community, and for all the young people alive today blissfully unaware, as I was, of the horrors that lay before them when they get this disease. And because I am making the film for them, my intended audience is absolutely everyone else.”

What we can all do next:

The best way to raise awareness is to click HERE and follow the simple instructions

To go straight to watching the trailer and to make a pledge of support click the following image:

Jen wall of science Canary

The aim of the campaign is to raise $50,000 over the next 31 days so that this extraordinary film can be completed and your story told to the world!

Thank you!

{ 68 comments… add one }

  • Ember October 23, 2013, 1:05 am
    OK, y'all need to slow down now. This is really too much!​
    I lie. DON'T slow down. Let's keep pushing, pushing, pushing. What an amazing first day. We've raised over $10,000 in less than nine hours thanks to the generosity of dozens of people and countless more who have started to help us spread this message.​
    Nothing prepared us for how much love and joy we would feel today, and with all of that support behind us, I think we really can do the impossible.​
    We are WORTH IT. We are worth a big f'ing movie. I even see people writing on their Facebook pages, that this is a film about "Myalgic Encephalomyelitis," a disease formerly known as Chronic Fatigue Syndrome. THAT is how powerful media can be. That is (one) of the changes I hope we can make in the world, together. ​
  • Firestormm October 23, 2013, 1:13 am
    Ember

    Up to $18,000 when I looked just before publishing, Ember!! :)

    BTW We delayed publishing until this morning in the end, as Jen felt – after some technical difficulties with Kickstarter – it was better leaving the article until this morning.

  • Ember October 23, 2013, 1:27 am
    Firestormm

    Up to $18,000 when I looked just before publishing, Ember!! :)

    Where do you find that? I find $10,517 here.

    Edit: Found it!:thumbsup:

  • Firestormm October 23, 2013, 1:56 am
    Ember

    Where do you find that? I find $10,517 here.

    Edit: Found it!:thumbsup:

    $19,214 now :) :) :)

  • justinreilly October 23, 2013, 2:03 am

    Wow! I'm just bowled over by the trailers and this interview. This is going to be an absolutely amazing movie!

  • RUkiddingME October 23, 2013, 8:46 am

    My pledge is in and I look forward to attending the screening!! Already $20,000 raised! This is going to happen folks! YAY for us!

  • leela October 23, 2013, 10:25 am

    $21,471!!!

  • Ember October 23, 2013, 10:46 am

    Canary in a Coal Mine shared a link.
    near Princeton, NJ, United States

    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/

  • akrasia October 23, 2013, 11:02 am

    First, when I read Osler’s Web and learned that I was only two years old when the Incline Village outbreak happened. It was hard for me to wrap my head around the idea that, aside from a small cadre of devoted doctors and scientists, almost my whole life had been squandered when it should have been spent looking for a cure for the disease that would someday change my life.

    This is a perspective that has been missing from the conversation. Mary Dimmock echoed this recently when she declared that her son should never have gotten M.E. This is not merely a counter factual assertion. The lives of those who succumbed to M.E. in the 1980's were judged disposable, like so many of our fellow citizens, who have the "bad luck" to be poor or mentally ill. The marginalization machine geared up and got to work suppressing alternate views, rendering people's conditions "inevitable" or their clamoring for effective medical attention and research illegitimate, even ludicrous, akin to a demand to accepting a flat earth. How could anyone think in any other way besides M.E. being a dysfunctional adaptation to some vague, threatening modernity.

    I don't think the "system" is broken. I think M.E. lays bare the way the institutions like the NIH, the CDC, and their academic extensions, operate. I hope Jen and company emphasize the nature of power and the economics, misogyny, the devotion to a stupid positivism, the flight from complexity, and an arrogant, high handed bureaucratic complacency that even now, as we've seen with the IOM debacle, renders us supplicants rather than equal actor/citizens.

    This perspective by the newly diagnosed of questioning why M.E. was not addressed when it emerged circa 1984 is powerful and I think in the next few years will become more and more prominent.

    A friend of mine's daughter, like Jen engaged in a Phd program, was diagnosed a few months ago and had to drop out. The juggernaut rolls on.

  • Simon October 23, 2013, 12:20 pm

    Great article, Fire, thank you. And very persuasive filmakers too ($23,500 is latest figure).

    Funnily enough I saw my consultant recently who said he was worried about research that failed to include the severely-affected, because it might exclude those people who define the illness.

  • Ember October 23, 2013, 1:45 pm

    Half way! :)

    $25,042 pledged of $50,000 goal
    30 days to go

  • leela October 23, 2013, 1:49 pm

    omg, halfway in just over 24 hours! this is fantastic! here's to a continuous momentum :)

  • Ember October 23, 2013, 2:44 pm
    leela

    here's to a continuous momentum :)

    Canary in a Coal Mine

    We are the second hottest film project on Kickstarter right now!

    Thank you, thank you for your support and for your help keeping the momentum going. Every good day helps beget more good days. Momentum like this helps us to attract more attention, more media, and to reach ever wider audiences.

    #MEAlly #seeME

  • Nielk October 23, 2013, 2:48 pm
    akrasia

    This is a perspective that has been missing from the conversation. Mary Dimmock echoed this recently when she declared that her son should never have gotten M.E. This is not merely a counter factual assertion. The lives of those who succumbed to M.E. in the 1980's were judged disposable, like so many of our fellow citizens, who have the "bad luck" to be poor or mentally ill. The marginalization machine geared up and got to work suppressing alternate views, rendering people's conditions "inevitable" or their clamoring for effective medical attention and research illegitimate, even ludicrous, akin to a demand to accepting a flat earth. How could anyone think in any other way besides M.E. being a dysfunctional adaptation to some vague, threatening modernity.

    I don't think the "system" is broken. I think M.E. lays bare the way the institutions like the NIH, the CDC, and their academic extensions, operate. I hope Jen and company emphasize the nature of power and the economics, misogyny, the devotion to a stupid positivism, the flight from complexity, and an arrogant, high handed bureaucratic complacency that even now, as we've seen with the IOM debacle, renders us supplicants rather than equal actor/citizens.

    This perspective by the newly diagnosed of questioning why M.E. was not addressed when it emerged circa 1984 is powerful and I think in the next few years will become more and more prominent.

    A friend of mine's daughter, like Jen engaged in a Phd program, was diagnosed a few months ago and had to drop out. The juggernaut rolls on.

    my bold

    I hope that history will not show how we have failed at this juncture of the IOM contract to do whatever possible to stop it before it can cause damage to countless generations to come. Will our children and grandchildren blame us for just standing by, or worse, taking part in this? Because the damage could be that great and the stakes so high, it is not an easy decision.

  • LJS October 23, 2013, 3:22 pm
    Ember
    OK, y'all need to slow down now. This is really too much!​
    I lie. DON'T slow down. Let's keep pushing, pushing, pushing. What an amazing first day. We've raised over $10,000 in less than nine hours thanks to the generosity of dozens of people and countless more who have started to help us spread this message.​
    Nothing prepared us for how much love and joy we would feel today, and with all of that support behind us, I think we really can do the impossible.​
    We are WORTH IT. We are worth a big f'ing movie. I even see people writing on their Facebook pages, that this is a film about "Myalgic Encephalomyelitis," a disease formerly known as Chronic Fatigue Syndrome. THAT is how powerful media can be. That is (one) of the changes I hope we can make in the world, together. ​

    I am thinking of donating, I wanted to express my one concern and am interested what the filmmakers opinion is. The film preview mentioned environmental toxins and the title suggests this narrative too. I hope the film does not focus much on the cause of this illness which is very unclear at this point but more on proving to the audience that the patients are truly sick. In other words present the facts so clearly that it invokes an emotional response from viewers instead of trying to provoke an emotional response without the substance for scientist and people more critical of the illness to believe it.

    All in all I am sure it will be beneficial to the community and I wish the team all the best.

  • Ember October 23, 2013, 3:35 pm
    LJS

    I am thinking of donating, I wanted to express my one concern and am interested what the filmmakers opinion is.

    You can scroll down here to ask a question:

    FAQ

    Have a question? If the info above doesn't help, you can ask the project creator directly.

    Ask a question

  • SickOfSickness October 23, 2013, 6:10 pm
    LJS

    I hope the film does not focus much on the cause of this illness which is very unclear at this point but more on proving to the audience that the patients are truly sick. In other words present the facts so clearly that it invokes an emotional response from viewers instead of trying to provoke an emotional response without the substance for scientist and people more critical of the illness to believe it.

    Jennifer addressed this in a FAQ on the site.

    She said something to the effect of, she will be including all the views on what are possible causes, and not focusing on any one. I gathered it was like you said, to show the causes are unclear.

    In reading what she writes, I am very confident she will show we are ill, with some of the abnormal test results and so on, (the few we do have) and what experts say (like Enlander).

    As well as showing lots of types of treatments undergone and not saying which are better or right or wrong.

  • Firestormm October 24, 2013, 1:48 am
    LJS

    I am thinking of donating, I wanted to express my one concern and am interested what the filmmakers opinion is. The film preview mentioned environmental toxins and the title suggests this narrative too. I hope the film does not focus much on the cause of this illness which is very unclear at this point but more on proving to the audience that the patients are truly sick. In other words present the facts so clearly that it invokes an emotional response from viewers instead of trying to provoke an emotional response without the substance for scientist and people more critical of the illness to believe it.

    All in all I am sure it will be beneficial to the community and I wish the team all the best.

    Morning LJS,

    You echo one of my own concerns – hence the question in the article above and Jen's answer to it. I did think that perhaps the Trailer used too much about toxins in the 9-10 minutes available to them – the bees etc. but that's just my own opinion. I don't think it necessarily gave the impression the complete documentary will lean too much to toxins being THE cause. Have another read of Jen's answer above and raise your concerns with her as Ember has indicated. The more she is aware of people's concerns the more your concerns might influence the film outcome.

    BTW the questions in the article above are abridged. My questions to Jen – and we could only do this interview via email unfortunately as we were both feeling worse than 'normal' at the time – were more detailed. But I did want to better understand the reason why the title for the film was chosen.

    Good concern though – thanks :)

  • Firestormm October 24, 2013, 3:43 am

    Latest update:

    View attachment 5775

  • Snow Leopard October 24, 2013, 3:48 am

    Nice.

    I only contributed a little bit, I wonder where all the rest of the money came from? 😆

  • ellenelle October 24, 2013, 8:38 am
    Snow Leopard

    Nice.

    I only contributed a little bit, I wonder where all the rest of the money came from? 😆

    See for list of backers: http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine/backers . There are 69 as of this moment, just lots of people making small contributions.

  • SickOfSickness October 24, 2013, 10:19 am

    Highest donations thus far:
    1 donated $5000
    4 donated $1000
    7 donated $500
    1 donated $400
    1 donated $275
    6 donated $250
    1 donated $200

  • lnester7 October 24, 2013, 10:50 am

    Why the name??

  • Firestormm October 24, 2013, 11:16 am
    lnester7

    Why the name??

    The answer is in the article :)

  • leela October 24, 2013, 2:36 pm

    Holy Cow! $39,066!!

  • dannybex October 24, 2013, 7:21 pm

    I think it's great they're considering mentioning the many possible causes or contributions to this disease. IMHO it's clearly not just a viral or bacterial infection. Everyone gets those and gets over them. That kind of narrow thinking (by some of the so-called 'top docs') hasn't gotten us very far.

    I commend these women for taking on this monumental project, and will make a donation myself ASAP. I just hope they can get more help from healthy peeps, so that they don't end up in a severe crash from the enormous stress of it all.

    Thanks too to Firestorm for the great interview.

  • leela October 24, 2013, 7:30 pm

    !:thumbsup:!
    444
    Backers
    $41,982
    pledged of $50,000 goal
    29
    days to go

  • Ember October 24, 2013, 8:54 pm

    Telling it louder…

    So this is, at its core, about telling our own stories….

    I’m kicking myself that I didn’t grab it when I saw it, but someone even wrote that this was a film about “Myalgic Encephalomyelitis, formerly known as Chronic Fatigue Syndrome.

    So, it got me thinking. Maybe it doesn’t take a formal proclamation by a committee to make this happen. Maybe it just takes us crafting our own message, and telling it louder than anyone else.

    There were a lot of people who urged me, before we launched, not to use the combined name ME/*** term. I understood where they were coming from but didn’t really think I had a choice about stepping outside the box I’d been put into. The thing is, the words we use do matter because other people will repeat them. Because of the influence of a few of you whom I spoke to (and you know who you are!), the folks who don’t have our disease are getting to be introduced to it for the first time in a completely different way.

    In fact, I’m starting to think that the fact that our disease is so unknown is actually a good thing. It means that if we can make it known in a really big way, all at once, we will completely overwhelm the small number of people who know only the half-truth with the large number of people who get the learn the whole truth for the first time.

    Louder than this…

    Canary In A Coal Mine – Chronic Fatigue Syndrome ME

    The Coffee Klatch

    Canary in a Coal Mine follows the lives of several remarkable people living with a Myalgic Encephalomyelitis/CFS a mysterious and devastating disease…. Canary in a Coal Mine is about the human consequences of a medical system that is ill-equipped to treat an illness that challenges its every assumption, the danger of ignorance, and the power of a name.

    (SYNOPSIS…)

  • Ember October 25, 2013, 2:04 pm

    Canary in a Coal Mine shared a link.

    Internet radio interview with Dr. Enlander and Jennifer Brea about Canary in a Coal Mine. The first, I hope, of many opportunities to raise the profile of ME.

    http://www.blogtalkradio.com/thecof…onic-fatigue-syndrome-me#.UmqKn9QwAWk.twitter

    Great interview! Dr, Enlander announces a second Mt. Sinai ME/CFS Conference on November 20, featuring Drs. Klimas, Peterson and Schadt. All patients are invited.

    Jennifer Brea hints that Dr. Hornig may have found something interesting concerning gender differences in disease presentation. She asks us to share our stories and help raise the entire budget of $200,000.

  • Firestormm October 25, 2013, 3:03 pm
  • Ember October 25, 2013, 3:12 pm

    Done! [​IMG] :balloons:

    $50,000 pledged of $50,000 goal
    28 days to go

  • leela October 25, 2013, 3:16 pm

    I have not been this inspired/hopeful about anything M.E.– ever!

    Yay Jen and yay us!!

  • Firestormm October 25, 2013, 4:08 pm
    Ember

    Done! [​IMG] :balloons:

    This is so cool. I mean 28 days to go and yet they have reached their minimum. Fantastic news. Now if more can be raised – they can interview more people and even come across the pond to my patch. Be great to think I might even get to meet Jen.

    Don't forget folks that they are still happy to consider applications for interviews :)

  • Ember October 25, 2013, 4:23 pm

    TED Blog
    Illuminating an illness without end: Fellows Friday with Jennifer Brea
    Posted by: Karen Eng

    “I believe that we will make a beautiful film and it will change things forever for our community.”

    It started as a project that was about helping me to cope with what I was going through, and it’s become about something so much larger than myself, more universal than my specific disease. There’s this weird feeling of “This will happen, it will work, because it has to.” It’s a feeling of when there’s something that is wrong in the universe, something that is unjust or untrue — there’s a kink in the line and all of that force wants to be unleashed. I believe that the universe wants to right itself.

  • leela October 25, 2013, 5:00 pm

    It's an excellent interview. She is so articulate and down to earth.

  • Ember October 25, 2013, 6:22 pm
    leela

    It's an excellent interview. She is so articulate and down to earth.

    Jennifer makes an excellent spokesperson. Here's her 2009 TED Fellow Profile:

    I tell stories with data, words, and moving images.

    Currrently, I am a Ph.D student at Harvard studying politics and statistics. I study conflict, violence and prosperity, in Africa and in the historical US South. I am writing a memoir about my grandmother.

    New discovery: the thrill of shooting and editing video, then sitting in a darkened room, watching something you've lovingly labored and fretted over for weeks, not certain whether anyone would see what you saw, and hearing everyone laugh and gasp in all the right places.

    Prior to Harvard, I was a freelance writer in China and East Africa for the Guardian, the Scotsman, the Africa Report, and Ebony Magazine.

  • Ember October 25, 2013, 6:38 pm

    OUR GOAL: $200,000, 6509 backers, 28 days

    "We want to become the most popularly supported documentary film in the history of Kickstarter. 6509 backers will get us there. It only takes $1 to write a new story and change the future."

  • aimossy October 25, 2013, 7:56 pm

    so to get a donation to this film I have to do it within this 28 days is that right?

  • leela October 25, 2013, 8:02 pm
    aimossy

    so to get a donation to this film I have to do it within this 28 days is that right?

    Not necessarily. You can do a regular tax-deductible donation through other channels; I think there's a place on the kick starter page that links to it.

    E.T.A.:

    If you are interested in making a tax-deductible donation or investing in the project in a deeper way, email jen@canaryinacoalminefilm.com. We'd love to have a conversation.

  • Ember October 25, 2013, 8:18 pm
    aimossy

    so to get a donation to this film I have to do it within this 28 days is that right?

    The Kickstarter campaign runs until November 22:

    Funding period
    Oct 22, 2013 – Nov 22, 2013 (31 days)

    Some of the rewards have limits though. A friend of mine pledged at the $155 level to get the ten-minute telephone conversation with Howard Bloom! There were only three of those and they're gone now.

  • aimossy October 25, 2013, 8:35 pm

    thanks leela and Ember!

  • Ember October 27, 2013, 9:02 am

    More than a third of the funds have been raised in less than five days!:)

    671 backers

    $70,721 pledged

    26 days to go

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

  • leela October 27, 2013, 9:55 am

    far out!

  • Ember October 27, 2013, 6:16 pm

    Backers are flocking to the $25 pledge:

    Pledge $25 or more

    47 backers

    IN MEMORY OF – Get a digital download of the completed film. Also, a shout out, and thanks on our website. Remember a loved who had ME with an "In Memoriam" credit at the end of the film.

    Pledge $25 or more

    145 backers

    DOWNLOAD IT – Get a digital download of the completed film. Also, a shout out, and thanks on our website.

  • leela October 27, 2013, 6:50 pm

    Isn't it awful that 47 of us know someone who died from this fricking illness. I chose that one specifically so I could add her name.

  • BeBe November 2, 2013, 1:58 pm

    HI, this is exciting. call me confused 😉 but is it too late to "pitch my story"? I am often overwhelmed by the website and computer in general so stay out of the loop pretty much.
    diagnosed with this illness in Aug 2001. Read the newsletter today and need to connect.
    thankyou

  • BeBe November 2, 2013, 2:06 pm

    hi sorry i guess it is done. I get so mad i cant even keep up with THIS stuff. best of luck to you with the film. sigh. I would love to tell my story I guess I have to write it down in total. I have kept a small diary over the years to vent in. that help[ed

  • Firestormm November 2, 2013, 2:15 pm
    BeBe

    hi sorry i guess it is done. I get so mad i cant even keep up with THIS stuff. best of luck to you with the film. sigh. I would love to tell my story I guess I have to write it down in total. I have kept a small diary over the years to vent in. that help[ed

    No. It isn't too late to pitch your tale – as far as I understand. Visit the website here and contact Jenn direct :)

  • Ember November 2, 2013, 2:22 pm
    BeBe

    hi sorry i guess it is done.

    The campaign is still in full swing, having surpassed $100,000 now. And stories are still being
    requested, so do join in!

  • BeBe November 2, 2013, 2:27 pm

    Anyway you have emboldened me to call it ME. i have described it as being hit by a truck with the worst flu in my life which I then have had for years. more to that of course