Thank you so much who has joined our team and stepped up to make this documentary possible. Through your unparalleled passion and dedication, we've hit our initial $12,000 goal with 12 days left! We have announced our stretch goals via Phoenix Rising, Facebook, and Kickstarter. With $16,000, we can film in Hawaii or Europe. With $20,000, we can do both! Or, if you have a better idea about technical upgrades, music, or travel itinerary, please let us know how you'd like us to spend the extra funds and we'll let everyone vote on the options.
"ME/CFS is the great under-reported medical story of the times." Llewellyn King, host of PBS's White House Chronicle and columnist for the New York Times-Hearst Syndicate.
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The story of this film begins with a story I wrote for USA TODAY about my struggle with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) over the last 6 years. The response to the article marked me deeply. People from all over the world wrote in describing the pain of living with the illness. Many talked of decades unable to work or even to participate in normal life.
Patients feel a constant, unrelenting exhaustion that is unrelieved by sleep, rest, or exercise. Because there is no treatment, they are often disabled.
I started to feel a moral calling for an in-depth creative and journalistic investigation into the roots of this illness; it was a calling to give these unheard voices a forum to speak to a world that has neglected them for far too long. I firmly believe that the first step to improving these lives is for greater global awareness of ME/CFS. Only then can we receive more research research funding and remove the sad stigma that often prevents a frank international conversation beginning at all. This film is the best way of doing that.
ME/CFS is a devastating illness that the CDC now estimates affects well over a million Americans and more than 20 million people worldwide. ME/CFS is a illness with no cure; it also has no single known cause. It is a complex, multi-system disorder that, although fairly widespread, remains extremely difficult to diagnose and treat. Many, many patients fall through the cracks in the medical system and the social safety net, lose family support, and essentially disappear from society altogether. According to a 2008 study, ME/CFS causes at least a $20 billion cost on the U.S. economy alone through lost wages, healthcare spending, and lost productivity. Yet, according to recent numbers, the National Institutes of Health allocates just $6 million annually to research. This is just a tiny fraction of the funding given to illnesses of similar severity.
The most likely scientific way forward is for ME/CFS researchers to work in the exciting new fields of proteomics (protein mapping), Big Data, and the major revolution in personalized medicine going on across the world. This is one of the most promising solutions for this illness and it is also a leading frontier for nearly every illness: from heart disease to cancer to epilepsy. Applications of Big Data technologies are already transforming fields as diverse as politics and highway traffic control. In telling the story of ME/CFS with this film we are essentially telling the story of the future of medicine itself. And that is truly a message that all of society can gladly get behind.
We plan to travel through 10 cities across North America interviewing activists, patients, researchers, and doctors. We'll produce a feature-length film documentary for release on Netflix, Hulu, iTunes, and Amazon Video on Demand.
Yet even more than that, we plan to equip people in towns and cities across the world to stage screenings of the film in movie theaters, schools, hospitals, churches, and community organizations. It's a tragic fact of this illness that most patients are far too ill to protest in the streets in order to get society to hear our voices. However, we can tell this story through a documentary film, widely distributed through grassroots organizing. We can tell the story, together, and help build bridges between communities of faith, politics, science, and the arts. True change will happen person by person, one community at a time.
Nicole and I could never do this project on our own. This is a community project. It requires not only funding from individuals and organizations but also an army of people across the world who are on fire about this film and its message, who want to tell anyone and everyone about it. We'll make the documentary. We'll distribute it on Netflix, Hulu, and iTunes. But we'll need each and every one of you to help make its message stick.
We've been reaching out to prominent researchers, activists, and scholars in the ME/CFS community and we've been excited about the response so far. But more importantly, we're delighted about the surprisingly strong response from all the "ME/CFS agnostics" with whom we've been talking. People with backgrounds in law, politics, science, faith, and the arts are moved by the struggle of people with ME/CFS and see this project just as we do. It is nothing less than a struggle for social justice. Come join us!
RYAN PRIOR is a writer and researcher involved in politics. He was the founder and editor-in-chief of the Georgia Political Review and went on to jobs writing for The Daily Beast and USA Today. He's also worked for a foreign relations think tank, a congressional campaign, and for U.S. Congressman Austin Scott (GA-8). His reporting and commentary have appeared in The American Conservative, Real Clear Politics, and several other publications. His poetry has appeared in Falling Hard: Poems of Love and Sex.
NICOLE CASTILLO is a producer and filmmaker with a passion for social justice. She was the VP of Community Outreach for the University of Georgia chapter of Habitat for Humanity. A fluent Spanish speaker, she got her start working as a television journalist for Univision in Atlanta. From there she moved to Aero Film, a film production company just outside Hollywood, where she helped develop reality television programs with the creator of Survivor and helped film and produce the high-octane sci-fi thriller DRONE. She's fresh off a stint as a 2nd AC for the feature film Treehouse.
Risks and challenges
Our budget proposal is based on the cost of HD camera, tripod, 3-point cinema-quality lighting kit, microphones, and film editing equipment as well as food, gas, and lodging for the crew throughout a roughly 6 week shooting period.
If you have a lodging for the crew available or if you'd like to loan equipment to the production, please feel free to contact us about making those arrangements as well.
As with any project, we do see some challenges in the course of making this documentary. We have listed out the potential challenges along with seriousness or detrimental nature of the challenges.
1. With any production, there is risk in equipment malfunction or damage. In the majority of cases, we will lose specifically insured equipment. During transportation, we've made special arrangements for securing safe passage for high-tech equipment. We will purchase relevant safety and insurance measures if we do not already have them.
2. The schedules of some of our interviewees, such as government officials in the House and Senate, could hinder their availability. However, we have already communicated with these individuals and are currently in the process of confirming the interview dates.
3. Limitations on schedule and mobility of particular ME/CFS patients whose stories we'd like to tell. Patients in severely compromised states will find it difficult to talk with the production; therefore we've budgeted more time in each interview location to allow for additional flexibility when working with patients in home situations.
From the bottoms of our hearts, thank you for your help in making this project a reality!Learn about accountability on Kickstarter
We will share the life stories of a an accurate cross-section of the ME/CFS community, including the 25% of patients with severe ME. We plan to interview severe patients when possible. We're interested in lifestyle adaptations such as canes, walkers, wheelchairs, and oxygen tanks, among many other possibilities. We also want to talk with severe children too. We can't allow these kids to grow up with an incurable illness in the 21st century.
2. We have interviews lined up in San Francisco July 17th, when we're to speak with Dr. Andy Kogelnik at the Open Medicine Institute. From there, we'd like to talk with Montoya at Stanford, Dan Peterson/Simarron/Whittemore Peterson in Nevada, and Chia in Los Angeles. We haven't finalized those interviews yet because we'd like to be confident we'll be fully funded.
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