Limitations can often bring out the best in people. Award-winning filmmaker Jen Brea didn't shoot her first movie, do her first TED talk or create a worldwide movement until after she was diagnosed with myalgic encephalomyelitis a few year ago. Commonly known as Chronic Fatigue Syndrome, ME can leave one painfully bedridden and, cruelly, can leave little to no physical signs. The invisible illness affects up to 30 million people.
Inc.: What is the best way to describe Myalgic Encephalomyelitis (ME)?
Jen Brea: It's a really hard disease to convey to people who haven't experienced it directly, in part because it can be so deceptive. I can "look well" one minute and then crash, and be unable to lift my head or even speak the next.
The media shows us 'chronic fatigue' as a woman looking sleepy at her desk, but the reality is that 25% of patients with ME are too sick to leave their homes or even their beds. An estimated 15-30 million people around the world are suffering from ME; that means 3.75-7.5 million people housebound or bedbound. Roughly 80% of us are women and 80-90% of patients are undiagnosed.
You spent years working on the award-winning documentary Unrest. How did the conversation change after the movie came out?
I decided to make Unrest about a year into my illness, after I went online and realized that there were millions of people around the world who shared my story, many of whom had gotten sick in the 1980s and 90s and decades later, were still homebound, still bedridden, still waiting for research and care.
Since the documentary premiered last year, so many patients have felt seen and heard, most powerfully by their own friends and family. I've also seen new clinicians and researchers become interested in the field after watching the film. We are sending Unrest to every congressional staffer and we've held screenings at parliaments all over the world.
Lastly, Unrest is a part of a much larger conversation bubbling up in our culture right now about the intersection of gender and disability, and about women's health. So many incredible books have come out in the last six months including Doing Harm by Maya Dusenberry, Julie Rehmeyer's Through the Shadowlands. Porochista Kapour's Sick and Abby Norman's Ask Me About My Uterus. I am heartened that so many are speaking out.
Tell me about the origins of MEAction and the goals of this Saturday's #MillionsMissing worldwide demonstration.
Online, I saw patients working all around the world to create change in their own pockets of the Internet, but who often had a hard time getting the word out or finding others to connect with and take action. I realized -- along with my co-founder, Beth Mazur -- that we needed to create a platform where we could amplify, support, and direct those efforts, and connect activists to one another. That was the beginning of #MEAction.
The goal of the #MillionsMissing campaign is to demand that our governments around the world address the healthcare crisis for patients with ME. This is our third year, and now 100 cities around the world - including New York, London, Paris, Sydney, Tokyo, Guatemala City and Santiago, Chile - are taking action on May 12th! In the US, we are demanding Francis Collins, director of the National Institute of Health, increase research funding for the development of a biomarker, clinical trials, and ultimately, the first FDA-approved drug. This is a research field that has been critically underfunded for decades. 2018 saw a small bump up from our historic $5-6 million per year to $12 million, but parity with similar diseases would be $250 million.
What role did social media play in your own medical journey?
The online community has been everything. It's how I found my diagnosis, how I got connected to the best doctors. Even now, I sometimes I have symptoms that I think no one shares, but if I post about them on Facebook, inevitably I get dozens of responses of, "Yup, me too!"
When I was bedridden, it was my sole connection to the outside world and to other humans. I've met so many incredible friends and collaborators. Social media has a dark side, to be sure, one we have learned a lot about in the last year, but for some people with disabilities it's our whole world. By connecting us with one another, it saves lives.
How have your physical challenges and boundaries transformed you into who you are today?
When I got sick within the course of about a year I went from a 'normal' I most certainly took for granted - spending summers on various continents doing field work; running, hiking, biking, kayaking; having a body and a brain that allowed me to do and be and think in whatever way I liked - to being almost completely bedridden, often unable to read, write, speak or think clearly. To an extent I wasn't even fully aware of, I defined myself by my abilities. Suddenly, I lost everything I thought made me who I was. If I could never leave my bed again, could not read and write or be a part of the world, what value did my existence have?
It felt like I was falling down a long, dark well, futilely trying to find something to hold on to so that I could claw my way back or at least stop falling. You spend so much time trying, wishing, fantasizing about going back. At a certain point, I realized that no matter what lay down the road ahead, there was no going back. If I was going to survive, I could not predicate my survival on my recovery. My life had shrunk essentially to the size of my bedroom. Once I embraced that, I could say, OK, what do I have? What can I do? I resolved to be grateful for and to inhabit every inch of that new life and those new abilities. And then I got to work.
Working meant being on my laptop, engaging the world via email and social media, and eventually, directing a film, all from my bed (or couch). Sometimes I had five good hours in a day, sometimes ten minutes, sometimes nothing at all. I learned in those years the power of geological time. A drop of water falling on a rock can create a canyon, given enough time. I was that water on that rock, using whatever time or capacity I had in service of a single-minded vision, without any judgment about how long it would take. The narrowness of my life gave me a focus that eluded me when I was young, healthy, and able-bodied, with seemingly limitless time and options.
I also choose to make meaning. I don't think everything that happens to us happens for a reason and is good. At the same time, we can take those moments and chose to imbue them with deep and beautiful meaning. I did that by finding and creating community, by joining with others to fight, by telling stories, by making art.
We're talking again five years from now. What impact would you want to see?
I want ME included in every medical school curriculum (it is currently taught in less than 10% of medical schools). I want a new class of medical students and scientists who have graduated and decided they want to specialize in treating and researching this disease. I want $250 million dollars per year from the NIH, an FDA-approved biomarker, and our first verified, validated drug treatment. I want every patient to get diagnosed within the first weeks and months of illness, so that we can prevent unnecessary disability. I want to end the stigma and ensure everyone is as familiar with ME as they are with MS, cancer, heart disease, and ALS, so that we can all agree that patients deserve our support and our care.
There may have been a moment when you wanted to give up, but you didn't. What is the one insight someone should remember when they are going through their darkest moment?
You are not alone - there are thousands of us out here, online, who love you and need you. No matter how small your world has shrunk, no matter what you have lost of your abilities or your identity, as long as you are alive, there is still something only you can give the world.
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