The following excerpt is from Kickstarter. (Click on the video to watch the trailer.)
THE BLUE RIBBON is a film exposing the hidden story of ME/CFS. It features interviews with top researchers, doctors, and activists.
"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.
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.
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.
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!