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The Blue Ribbon: Ryan Prior on His ME/CFS Documentary Movie

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by Ryan Prior


Ryan Prior
Photo: Amanda Bloch 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.


Trailer for The Blue Ribbon – click the image to start the video

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.


Ryan and Nicole’s proposed route
Image: Ryan Prior

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.


Filmmaker Nicole Castillo
Photo: Nicole Castillo

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!


Further links

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

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The Blue Ribbon: The ME and CFS Documentary Project

Each day we hearing of more and more people who wanted to donate to the film but missed the Kickstarter deadline. It's great news! We are actually in the process of raising, through various sources, at least $14,000 more beyond the original $18,000. We want to do this film justice and need to make it full time job for both of us to deliver that quality. If you or someone you know would still like to help, PayPal donations can be made at our website: http://cfsdocumentary.weebly.com/
 
The Blue Ribbon: The ME and CFS Documentary Project
We're so proud and thankful to have Silicon Valley public relations guru Shari Boxer Baker sign on to donate her PR expertise to promote this film.

If you have promotional ideas, drop her a line at sboxerbaker@jdsgrouppr.com.

Here's some more info about her:

"They ought to make one of those Lifetime Channel movies about her," says John Flaherty, chief of staff to federal Secretary of Transportation Norman Y. Mineta. "She's someone I would characterize as heroic."

http://www.bizjournals.com/sanjose/stories/2004/07/12/smallb1.html?page=all
 
They are really progressing fast!

Workwell Foundation
Staci Stevens, Christopher Snell, and Mark VanNess were interviewed for the production of "The Blue Ribbon", a documentary about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
 
On the FB page:

We are beginning an e-mail newsletter to keep non-Facebookers updated on the film. It'll be a monthly or bi-monthly update with full-color photos, the latest updates about the film, and ways to get involved in the movement! Click here to sign up for it (the link is below the PayPal button).

http://cfsdocumentary.weebly.com/

(Go right down to the bottom of the page to find the email sign-up).
 
Update from Ryan's Facebook page:

https://www.facebook.com/CFSDocumentary/posts/851493298214860

Forgotten Plague said:
We are so excited to say that we have just sent out our first few film festival applications! We will apply to about 10 this month. Festivals are the best way to get publicity, distribution deals, recognition, awards, and generally greater mainstream traction.

We will hope to have a World Premiere at the biggest festival we can.

The process takes several months to hear back, so the earliest premiere date will likely be in spring 2015!

Exciting news!
 
Any word about when it will be available online, iTunes or something?

Actually, here's a relevant new post from Ryan's FB page:

https://www.facebook.com/CFSDocumentary/posts/851765548187635

The Forgotten Plague said:
We've had some questions about Kickstarter rewards, public screenings, DVD/streaming sales, etc., so now is a good time to explain in a little more depth the process of independent film distribution and how these play into the eventual 2015 Forgotten Plague release.

Premieres for independent films (and many big studio films) almost always take place at film festivals. The biggest and most famous are probably Sundance, Cannes, and the Toronto Film Festival. But there are many other prestigious festivals such as Tribeca, South By Southwest, Telluride, Berlin, Venice, AFI, etc. If a film premieres at a place like Cannes, for instance, that makes it eminently more plausible to get accepted into other regional festivals, and have a longer festival run.

Festivals are, by far and away, the best places to gain publicity, notoriety, and distribution for films. Yet the top ones almost always require films they show to be World Premieres, International Premieres, North American/European Premieres, etc. So it does require a little bit of patience in between the completion date and the eventual premiere date.

For that reason, public exhibitions (or home viewings) of our film have to wait until after the scheduled completion date (January 2015) and the eventual World Premiere date (hopefully spring 2015). As we finish the soundtrack, animations, and titles for Forgotten Plague over the next few months, the working cut will have to stay under wraps until we can nail down a premiere date at a festival.

We are consistently blown away by the worldwide social media attention we're getting for this film and want to make sure we best serve the patients by making the biggest possible splash we can in our mainstream release. We just ask that everyone stay patient over the next couple months--we will promise to do everything we can to get the film into every format we can and every language we can. It's been a long and prosperous journey and we're so excited to be entering the final phase!
 
More from Ryan:

https://www.facebook.com/CFSDocumentary/posts/852431248121065

The Forgotten Plague said:
Great meeting today to sort out our festival strategy. As filmmakers get ready for festival runs, there are a maze of factors to include in picking to which festivals to apply: these include prestige, dates, entry fees, geographic location, and submission deadlines.

Here's a basic timeline of what we can expect:

--Mid-November: Our first festival applications go out. We will be using a working cut with a temporary soundtrack for our initial apps. We'll keep applying to quality festivals as we work through our schedule of submission deadlines.

--January: The final custom-tailored original soundtrack will be added to our cut along with the finalized animations and titles.

--Mid-Feburary: We'll begin hearing back from our November submissions (festivals tend to take several months to review the applications). We'll be waited with baited breath to find out if we've been accepted from our first few apps. It'll be just like waiting by the mailbox to find college acceptance letters.

--Early to Mid-March: Earliest possible World Premiere date.

--Spring 2015: There are a slate of festivals we're looking at that would enable us to premiere in the March/April/May timeframe. The hope is to do an earlier premiere and then pick up speed in the spring and summer as we show the film at more festivals and gain more traction.

Much of the hard work is over and now we're settling in for the waiting game!