ProHealth is proud to announce Ryan Prior as its 2014 Advocate of the Year. Each year ProHealth gives the award to an individual who has made outstanding contributions to the betterment of the ME/CFS community. Previous honorees were Jennifer Brea and Bob and Courtney Miller.
ProHealth founder, Rich Carson, says, “Ryan Prior is one of ME/CFS’s patient heroes who has gone to bat for every one of us by shining a bright light on the plight that sufferers experience every day. He’s a visionary who has made it his life’s goal to raise awareness, working tirelessly on behalf of patients to bring attention to this disease.”
Ryan was not your average high school student. By his junior year, he was captain of his high school cross-country team, president of the student council and a participant in NASA’s Student Launch Initiative – all while taking multiple advanced placement and honors-level courses. He had just returned from a summer in England where he studied writing and philosophy at Oxford University and had a poem selected for publication. An ambitious young man, he had his heart set on going to Princeton, Duke or West Point. He hoped to become an Army Ranger and ultimately pursue a career in writing.
Then on October 22, 2006, Ryan’s life changed forever. “Something completely snapped,” he says, describing his abrupt introduction to ME/CFS. “By early November, I had withdrawn from high school completely. Teachers had to come to my house to teach me, sometimes by my bedside, provided I could hold my head up long enough for instruction, or stay awake long enough to finish a math test. I saw 16 doctors, none of whom had answers.
“That year remains the most pivotal of my life. I am 25 years old now, but those initial trials at age 17 will likely remain the most profound and difficult of my entire life. That was the year when the foundations of my character were forged in a crucible of intense suffering and uncertainty. I developed a new type of wisdom. My knowledge that I somehow found a way to navigate those dark days feeds me through every other hardship I’ve ever faced. Everything pales in comparison to the horror of having to fight this disease.”
Ryan was fortunate to find an excellent doctor in 2008, who had experience treating ME/CFS. Dr. Karen Bullington, of Atlanta, developed a treatment protocol to meet his unique needs. “I take about 20 pills a day (mostly supplements), give myself a shot once a week (methylcobalamin, glutathione, and other components), and get an IV treatment once a month,” explains Ryan. “If I neglect to take some of these things, I will fall back to being very disabled within a few weeks.” Dr. Bullington adjusts his protocol every few months based on his current needs.
The treatments were effective and Ryan’s health improved enough to allow him to continue his education at the University of Georgia. Despite two severe episodes where he almost had to drop out, Ryan managed to get through with the help of accommodations arranged by UGA’s Disability Resource Center.
The Birth of a Documentary
By 2012, Ryan was a senior at the UGA. Following a six-month full-time internship at Newsweek, he began working as a Collegiate Correspondent for USA Today. Being both a patient and a writer, Ryan was acutely aware that his disease had, as he describes it, “a profound absence in the national conversation.” Therefore, he was constantly on the lookout for a news item about ME/CFS with enough national significance to justify him covering it for USA Today.
That fall, Ryan got the opening he was looking for – Dr. Ian Lipkin’s study definitively disproving any link between the XMRV retrovirus and ME/CFS. Many news outlets reported the story, but Ryan’s article had an important twist. Instead of writing a standard news story, he wrote an opinion piece, detailing his own personal trials battling the disease. The response was remarkable.
That initial article turned into a series of articles, which ultimately grew into the full-length documentary Forgotten Plague. “I had always planned on writing a book,” says Ryan, “but I felt that this was a story that might work better as a documentary. I partnered with my co-director Nicole Castillo, a very close friend at the University of Georgia, who was a cinematographer with a passion for social justice and health documentaries.”
Forgotten Plague is described as the story of an afflicted journalist who “embarks on a journey to find out why the CDC and medical system have neglected his disease, leaving millions sidelined from life.”
“The film tells the great under-reported medical story of our times,” Ryan says. “With threads detailing the politics, science, history, and deep human suffering associated with the disease, the film strives to give a panoramic picture of ME/CFS.”
The Making of Forgotten Plague
Filming took Ryan, Nicole and their crew to eight states and the District of Columbia. They interviewed numerous experts, including most of the top ME/CFS researchers and clinicians. We asked Ryan some behind-the-scenes questions about the film.
ProHealth: How did you come up with the title Forgotten Plague?
Ryan: At the end of shooting, we had a period of time to reflect on the totality of what we’d recorded. We wanted a pithy, impactful title that summed up the sheer magnitude of what we’d absorbed in our journeys across America. We heard the most devastating of stories each and every day.
The stress sent both my co-director, Nicole, and me to the emergency room. At times the content of the film was so emotionally fraught that Nicole fainted. Myself, I bottled up the trauma of the stories we heard, at times becoming emotionally numb. Some of the images now haunt me when I’m trying to sleep. I put my guard up, and tried to act like an objective journalist, not for professional reasons, but truly as a way to try and shield myself from the force of pain and suffering that we were hearing from hundreds of people. Coping with this knowledge of suffering in the world is a trauma I will grapple with for the months and years to come.
It’s simply horrifying to me that there could be a disease this severe out there and that there could be such a profound lack of clarity and vision from the medical community on fighting it. That’s why this film is called Forgotten Plague.
ProHealth: What was the most moving part of the film for you?
Ryan: Working with the Davis/Dafoe family was the most moving experience. Many films or stories can boil down to a single moment or a single image or single anecdote. After interviewing hundreds of people, getting countless hours of footage, and surveying the global landscape, the entirety of the story can be reduced to a single family’s story. The story combines our dual emphasis on innovative science and the human element.
Professor Ron Davis, of Stanford University, is one of the premiere geneticists in the world, a man who was present in most of the important moments in genetics in the past four decades, including each step in the Human Genome Project. Alongside Amazon founder Jeff Bezos and PayPal co-founder Elon Musk, Dr. Ron Davis is considered one of the people whom future historians will consider among today’s greatest inventors. That was from an article published in no less a magazine than The Atlantic.
Now, also consider that Dr. Davis’ son, Whitney Dafoe, is in his 30s and has one of the worst cases of ME/CFS you can imagine. He’s easily in the bottom 2% of patients. Top world experts say he’s the most severe patient they’ve ever seen. Whitney has lost the ability to speak, lost the ability to eat, even lost the ability to perform the most basic communication, verbal or otherwise. Whitney is slowly, and devastatingly, wasting away. I cannot go a few hours without thinking of him. Whitney’s suffering is forever weighing on my mind. I take many of the same pills that Whitney has been prescribed. What is the difference in our fates that I would somehow mount an improbable partial recovery while Whitney’s destiny would decline so sharply in the other direction? We have the same diagnoses, almost all the same prescriptions, but remarkably different outcomes. The answer lies, of course, hidden deep inside the cellular and molecular signatures of this disease.
So you have a story of immense human suffering and immense human potential living under the same roof. One of the greatest of all living scientists, Ron Davis, is forced to contend with a reality that his magisterial intellect can do very little to save his son’s life without a massive influx of funding. Millions and millions of dollars of funding is required for a man like Davis to lead the massive interdisciplinary science endeavor to save Whitney’s life. Yet the federal government has not yet allocated that money. It’s coming only in fits and starts from private donors.
My hope is that by showing the Davis/Dafoe story on film, we can cut to the essential human heart of ME/CFS’s devastation. My hope is that in telling that one, single story, we can build an unshakeable case for the change we need.
Availability of Forgotten Plague
Filming and post-production work has been completed and they are currently waiting on a release date. If you would be interested in showing Forgotten Plague at your home, school, community organization, or theater, you can sign up here. When the film is released, they will send you a Event Planning Guide and a Media Kit to show you how to plan your event. Eventually Ryan expects the film to be available via streaming services like Amazon, iTunes and others.
In the meantime, here is a sneak peak of Forgotten Plague:
As part of our commitment to donate 10% of profits to organizations focused on ME/CFS and fibromyalgia research and advocacy, ProHealth is honored to have been able to make a contribution to The Blue Ribbon Foundation to help with the funding of this film.