by Ryan Prior
On June 10, I announced in USA Today that I am setting out to write and co-direct a documentary film — The Blue Ribbon — on ME/CFS with my girlfriend, Nicole Castillo, who is a filmmaker with a special interest in medical and social justice projects. I am a writer and researcher who has had ME/CFS for over six years. We believe our youthful enthusiasm, specific qualifications, life experience and goals make us the perfect people to step up and do this.
The whole of my life revolves around a single day: October 22, 2006. I came home from school exhausted, and slept for 18 hours. There is my life before that day and there is my life after that day. Getting ME/CFS has simultaneously hardened and softened my soul; it has given me a new identity. It continues to shade nearly every decision I make.
Through excellent family support, great doctors, flexible schools and employers, and an extremely robust treatment protocol, I’ve been blessed to be able to manage my case, walk toward my dreams, and to begin to live the life I’d imagined.
I am one of the 10% of patients who manage to become high-functioning. But my journey is still far from over. I was able to work full-time for six months at Newsweek magazine in Washington, D.C., and then to follow it up with five months at USA Today. I recently graduated from the University of Georgia with a double major in international affairs and English. But even during my last semester, I was constantly missing classes, asking for deadline extensions, and mentally debating which final exams I could skip and still end up with a degree in at least one of my majors. Even in a well-managed case, I have far too many scary dips downward.
Many people with ME/CFS substantially improve, but too few people talk about it. Too few of the improved patients lean back to grab the arm of the person behind them to hoist them back up into normal life. That’s what I want to help do with this film.
I am unusual because I have one foot fully planted in the world of the healthy, but I’ve still got a toe impatiently tapping in the world of the sick. And by helping others in their journey, I hope I can finally complete mine.
Nicole and I set a $12,000 shoestring budget for about six weeks of shooting across the United States. We set a 36-day schedule to raise the money. So far, thanks to the pure passion of the ME/CFS community, we are on pace to surpass the goal in only half that time. Should we exceed our initial target, Nicole and I are releasing “stretch goals” for additional interviews and scenes to be included in the documentary. So far we have released plans for shooting the film entirely in the contiguous United States.
However, if we were blessed enough to have additional funding, that might allow us to go to Canada or Europe to interview veteran physicians like Byron Hyde or Kenny de Meirleir. It also might allow us to go to Hawaii, where we might try to arrange a segment on the set of Unbroken, a film directed by Angelina Jolie and based on ME/CFS survivor Laura Hillenbrand’s bestselling book of the same title. If those options become possible, we will introduce a survey by which donors can vote on where they’d like their money to go. Everyone who donates at least $1 would get a vote.
But this project is not just about making a film. The documentary has to inspire passion in the public to respond to this profound suffering. Just as important as this film are the actions that will follow after it.
That’s why we’ve also set the goal of attracting $50,000 in funding (separate from the money being raised on Kickstarter for filming) to create a fellowship for medical students in between their first and second years of medical school to study at the top ME/CFS research centers: places like the Open Medicine Institute, Simmaron Research, and the Whittemore-Peterson Institute. We want to inspire these students through this film and then immediately direct them into the centers of innovation that will eventually discover the cause and cure for ME/CFS and how to prevent it. It’s our chance to start training the next Byron Hyde, Dan Peterson, or David Bell.
In the coming months, we’ll also be working on our film’s “call to action” for others with the power to change the conversation on ME/CFS: politicians, journalists, artists, and communities of faith. We’ve been discussing posting a template letter that viewers could send to congressmen, senators, or members of parliament to campaign for more government funding. Other actions called for might be something as simple as meal-planning sheets that churches could use to delegate food delivery to housebound patients.
What I told Llewellyn King about the message of our film and fellowship is worth repeating here: American history has proceeded in a logical line from women’s rights, to civil rights, to gay rights. Medical history has a similar process of ridicule, repression, and ultimate acceptance. It’s happened for multiple sclerosis. It’s happened for AIDS. It’s our time now.
Let’s get this done.
How to support the documentary
• Donate via Kickstarter: We plan to continue fundraising beyond our $12,000 goal. With more funds, we’ll be able to make further filming trips or other additions to guarantee a high-quality film. If we raise over $16,000 we will create a survey via Kickstarter to allow all donors to vote on how we spend the extra money.
• If you cannot contribute financially, you can also help by offering food or lodging to the crew at certain points along our journey.
Please share the Kickstarter information via your social networks and encourage your friends and family to contribute!
Llewellyn King’s article on the Blue Ribbon project
The Blue Ribbon Facebook page
13WMAZ (Central Georgia) TV news interview with Ryan about the documentary
Remember that Phoenix Rising costs money to run and needs your donations to support it. Please hit the button below and donate!
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we’d love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.
And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.38 comments