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).
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?
“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?
“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?
“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.
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.
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.”