A frame grab of the author, Ryan Prior, in a promotional video for his ME/CFS documentary.
Seven months ago I wrote a story for USA TODAY College that changed the direction of my life.
I wrote of my six-year struggle with a little-known illness called chronic fatigue syndrome (also called myalgic encephalomyelitis). It was a hard story to write. Contracting this illness touched me at the deepest level of my soul; it changed my very identity. I’ve usually been very private about my health. It’s hard to tell those stories without tears in my eyes. But I did.
It’s hard to tell of dropping out of high school, of missed soccer games or missed proms, of the fear that comes with no doctor being able to explain why I was bed-ridden and my mind was too foggy to make even the simplest of decisions. That’s how life is for over a million Americans.
In my online articles, I am used to comments praising or criticizing my arguments. I am not used to people commenting on my articles saying they are thinking about committing suicide. That happened with that article. More than once.
It was the same for veteran journalist Llewellyn King when he realized that he had to do something about the scourge of ME/CFS. He wrote recently, “I wrote one column and was besieged with e-mails of gratitude; notes that began with ‘thank you’ and ended with ‘bless you.’ Journalists are not used to this kind of thing; instinctively, they suspect a trick.”
Sadly, for King and me, there is no trick.
The experience of writing that story and seeing its response set off many months of learning in which I became familiar with the greater ME/CFS community. I realized that although I have become reasonably functional, my recovery is impossible for most ME/CFS patients for financial, geographic, family support and medical reasons. These patients are neglected and this community is sorely in need of a mainstream national voice.
Late one night before we graduated, my girlfriend and I were sitting under the stars talking about our dreams. She’s a film major and told me she wanted to make social-justice or medical documentaries.
It didn’t take long to realize that we needed to find a way to make a medical documentary about ME/CFS.
Nancy Klimas, one of the world’s leading ME/CFS researchers, often compares the level of disability in an ME/CFS case to that of a late-stage AIDS patient. Having personally been through the worst of it, I can say that is one of the few statements that truly validates just how earth-shattering this illness is.
Yet the world knows about AIDS. Very few people outside our community are aware of the toll this illness takes. Few of us have the ability to speak up at all.
I fear that far too many ME/CFS patients suffer alone, with no idea that a million Americans and countless millions across the world are equally disabled. Studies estimate that 80% of these cases go undiagnosed.
There is no way I can ignore these facts knowing I have access to a national platform and have the skills to tell the story of these unheard voices.
I’ve always thought of journalism as one of the highest forms of community service. And more than anything, I feel I have a duty to serve my fellow fallen brothers and sisters.
The film we’re proposing will do things no film has yet done.
This film will go back deep into the centuries to explore the history of the illness. It will go into the future to show how researchers at places like the Open Medicine Institute will lead advances that will eventually discover its cause, cure and prevention. The film will tell of the long struggle of activists, many too sick to leave their beds, but desperate for answers. It will expose the history of indifferent government attitudes that got us to this point. Most of all, this film will tell the story of what it’s like to have life stolen from someone in his or her best years and to wonder why the most advanced societies on earth have nothing to offer, even as new people fall ill every day across the globe.
This illness community desperately needs more research to find bio-markers common in most or all ME/CFS patients. These advances will come through the exciting new fields of proteomics, epigenetics, big data and personalized medicine, fields that attract the brightest of our nation’s graduates. But we must first raise awareness so that scientists understand just how much potential for progress there truly is.
That’s why we seek to tell this story visually as it has never been told before.
We invite readers to join us on this journey and to lend their support if able.
For more information about the film or to support the production, please visit our website.
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