'Forgotten Plague' documentary trailer
WARNER ROBINS -- Pamela Stanescu said you should make every effort to see a movie Thursday.
A particular movie, she said -- one called "Forgotten Plague."
It was written, co-directed and produced by her former student Ryan Prior.
The free screening is at 7 p.m. Thursday at Shirley Hills Baptist Church, 615 Corder Road.
Retired now, Stanescu taught Prior in English and humanities classes at Warner Robins High School his junior and senior years before he graduated in 2008.
She remembers him as a "brilliant, athletic, hardworking, articulate, deeply observant and very, very compassionate student."
Stanescu said she also remembers the week in his junior year he started falling asleep in her class and the ordeal, then the diagnosis, that nearly sucked the life out of him: myalgic encephalomyelitis/chronic fatigue syndrome.
"One week he was fine and the next week he was not fine," she said. "It was so unlike Ryan, but he couldn't hold his head up -- he was sleeping in class. I said something to him about needing to perk up and he said, 'I know, but I can't.' ''
TOTAL IMPACT ON BODY, MIND AND SPIRIT
Essentially, ME/CFS causes sufferers to be unable to recover from physical activity. Prior said it's a severe, chronic, flu-like, achy pain. It's a post-exertional malaise. Walk five minutes and be disabled needing hours of recovery. Or days or weeks.
Off and on, he said that was his own experience. The impact is physical, mental and emotional.
While some still imagine the disease is "all in your head," Prior and others know otherwise. He said some cope with a measure of their former lives intact, but others enter a hidden existence of desperation and suffering.
He said the suicide rate in the ME/CFS population is high.
"I was lucky," he said. "I saw 16 doctors over about six months and was diagnosed. It sounds absurd saying that seeing 16 doctors is lucky, but some see 60 doctors and go 20, 25 years before they're diagnosed. Some go their whole life without knowing what's wrong."
Prior said he's also lucky because of the support of his parents, Tom and Mary Prior. Tom Prior is a retired Air Force officer and served as head of Habitat for Humanity of Houston County.
Prior said he was fortunate to find knowledgeable doctors and that his family could pay for the non-insurance-covered regime of 20-pills a day -- mostly supplements -- that help keep him going along with a weekly injection and monthly transfusion.
MAKING IT THROUGH SCHOOL
At least it keeps him going most of the time.
Prior said in high school he missed multiple months of classes and had to have home support teachers. Some days he couldn't lift his head to do his at-home assignments. When Prior could go to classes at school, Stanescu recalls letting him rest during lunch breaks in a small room attached to her classroom so he could make it the rest of the day.
But he did make it, then he made it through the University of Georgia, earning degrees in English and international affairs. He was even elected to Phi Beta Kappa, the liberal arts and sciences honor society.
During this time, with ambitions toward journalism and communications, Prior won intern posts and opportunities to write for Newsweek, the Daily Beast, USA Today, the American Conservative and Real Clear Politics. At UGA, he was a founder of the Georgia Political Review, a still-operating web and print journal that bills itself as "a forum to engage in discussion and debate of contemporary affairs at the local, state, national and international levels."
(Currently, Prior is editor-in-chief emeritus for GPR and said he now works primarily as an independent producer for CNN in Atlanta.)
All high achievements for a sufferer of chronic fatigue issues, but achievements not without difficulties.
Nicole Castillo, a native of Dublin, knew Prior while both were at UGA. She's now in a graduate film and television program at Loyola Marymount University in Los Angeles.
"I was Ryan's friend and I'm used to helping my friends," she said. "I felt an overwhelming sense of helplessness when I'd see Ryan having an ME setback. It's distressing to see a friend go through that."
Prior said at times the disease's debilitating effects made him consider quitting school but support from friends, family and faculty kept him going. Special programs at UGA helped, too.
BECOMING A FILMMAKER
After graduating, he took the hardships of living with ME/CFS and the lack of answers to its cause -- much less its cure -- and decided to make a movie, driven by his beliefs that there was a lack of funding for research and a lack of political clout among sufferers to lobby for greater funding, along with meager educational resources regarding ME/CFS and an out-and-out stigma of having such a mysterious disease.
He approached Castillo with the idea that she be co-director, cinematographer and producer.
"I wanted to do it," she said. "I knew the film side and he knew subject. Caring for social justice, I wanted to be part of helping do something about it."
Castillo said the two began a whirlwind effort to raise funds, especially through crowdsource funding. They eventually raised $150,000 with almost half coming from a single Boston philanthropist.
They also began a tour of the U.S., interviewing ME/CFS patients, their families and a variety of doctors, scientists, journalist and experts.
"I thought I knew a little about it but I realized I did not understand how extreme the illness really is," Castillo said. "Many can do nothing at all and they certainly can't work for themselves as advocates. Being a documentary filmmaker speaks to being able to speak up for people through film. It's certainly been one of the most rewarding experiences of my life. It's very important stuff. I just wasn't prepared for how jarring it could be, how absolutely floored I'd be by it."
While an intern with Univision in Atlanta, Castillo was able to do a multipart story on "Forgotten Plague" and won a Southeastern Regional Emmy for it.
PRESENTING THE FACTS
For Prior, "Forgotten Plague" is his story -- and much more.
The film has the cold facts and figures of an investigative report and advocacy film, such as:
That 20 million people worldwide suffer from ME/CFS with 1 million in the U.S.
That about 94 percent of medical students won't receive proper education on ME/CFS.
That the annual economic burden from lost wages and the inability of those with ME/CFS to work is about $24 billion.
That though the economic burden from ME/CFS is about the same as Parkinson's disease, public research funding for Parkinson's is 28-times higher than for ME/CFS;
That the disease, once considered merely a vague malaise, still carries a stigma though hard science and diagnostic tools are coming into place.
But Prior believes the weight of the film comes from the human side: the story it tells of people and families whose lives have been torn apart and those working on their behalf to find a cure.
And there's Prior's story. As in high school and as in college, during the making of "Forgotten Plague" the obstacle of Prior's own suffering came into play.
"I'm always at significant risk in doing a lot of this stuff," he said. "In one scene I took things a little too far and it caused me to develop a heart condition. But that's part of the story. It's what happens. It's the film's job to tell the story."
Prior said his instinct was that a film could do more than him just writing a few articles on ME/CFS. After 18 months in the making, "Forgotten Plague" premiered in Los Angeles in late 2014 with screenings, such as the one set for Thursday, beginning in November 2015. There have been 25 similar screenings with showings in the U.S., U.K. and Amsterdam, and about 15 more on the calendar, including ones in Ireland and Australia.
It's available on iTunes and amazon.com, and there's a "Forgotten Plague" website at www.forgottenplague.com.
'IT'S A GOOD STORY'
Prior, 26 now, said these days he functions at about 85 percent about 85 percent of the time. He plans to be at the Warner Robins screening which he hopes does some good locally. He's also looking forward to the event being a homecoming of sorts for old friends and supporters.
"We want the film to be educational, foster political action and help bring about funding for research," he said. "We're glad it also brings out patients and helps them connect. It brings out people who may have never known there were others out there like they are. There are doctors in the area encouraging patients and friends to attend. I'm very proud of our production team and what's been done. It's a good story. It's obviously not just me that's done all the work."
As for Stanescu, she's confident the project will have continued success.
"It was like Ryan got hit by a locomotive but in no time he was off like a locomotive in a new direction," she said. "For someone in his condition that's so amazing, but that's Ryan. I'll be there to see it but I won't be surprised at how great it is. Whatever he does, Ryan does it with his uttermost."
Contact writer Michael W. Pannell at firstname.lastname@example.org.
When: 7 p.m. Thursday
Where: Shirley Hills Baptist Church, 615 Corder Road, Warner Robins