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

June 26, 2013

by Ryan Prior

Ryan Prior credit

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.

The Blue Ribbon Trailer

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.

The Blue Ribbon map

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.

Nicole Castillo 300 px

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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31 comments

{ 31 comments… read them below or add one }

Sasha June 26, 2013 at 1:09 pm

I'm very excited about this project and have made a donation – I'm delighted to see that the Kickstarter fund already stands at $11,300 of the necessary $12,000 and hope that some of these extra filming goals can be achieved.

I think it would be great if Ryan and Nicole could film a segment on the set of Unbroken – imagine getting someone like Angelina Jolie interested in our predicament! That's worth $12,000 all on its own, and then some.

Let's get donating! :)

Moxie June 26, 2013 at 1:43 pm

Donating now. I think this is phenomenal. It also looks like one of your dots is in my neck of the woods (Virginia). I would like to help if I can. I imagine I can come up with some lodging at the very least. :)

Thank you both for doing this!

Sasha June 26, 2013 at 2:12 pm

That's great – the total is going up already!

Pile in and get your $1 worth of voting for Angelina Jolie, if nothing else! :)

Simon June 26, 2013 at 2:38 pm

If the film we be half as good as the article and trailer it will be a cracker. Donated. Still $500 to go!

Sasha June 26, 2013 at 2:46 pm

The total's still going up – wouldn't it be great if we could get this fully funded in the next 24 hours? $489 to go now! Very doable.

Sasha June 26, 2013 at 4:31 pm

Wow! It's done – the total is now $12,486 so Ryan and Nicole have passed the total they needed to guarantee the project.

Congratulations, Ryan and Nicole! :balloons:

And if we chuck some more money at them, they can add on those extra filming goals… like getting onto ANGELINA JOLIE's movie set :thumbsup:

Nielk June 26, 2013 at 5:48 pm

Ryan,:thumbsup:

I feel like you should be wearing tights and a cape. Our hero!!!

SpecialK82 June 26, 2013 at 6:00 pm

Ryan and Nicole – can't wait to see this documentary up and running! Thank you for all of your efforts. I have been doing alot of thinking lately about the need for huge publicity. I just dream of the day we see the issue being discussed on the evening news. We have a compelling and horrific story – people will care if they just understood what is really happening, I truly believe it.

I will be sending along my donation. I was going to write to you privately and ask if you've considered getting a short interview with Laura Hillenbrand. But I see that you are discussing getting on set with Angelina Jolie, which is crazy good!

I'm just thinking out loud here, and this is a huge reach – but if you can get in with Laura H. and/or on the movie set – how powerful would it be if the documentary is released at the same time 'Unbroken" comes out? That way the celebs or possibly Laura H would mention the documentary at the same time that they are being interviewed about the movie??

I realize that Laura H may not have anything at all to do with the movie as often happens, but i would also think that her story is generating some public interest in CFS as her health was mentioned and treated respectfully in interviews when the book came out.

Valentijn June 26, 2013 at 11:20 pm


Nielk

Ryan,:thumbsup:

I feel like you should be wearing tights and a cape. Our hero!!!

For ME patients, maybe compression stockings and a cooling vest instead :lol:

Sasha June 27, 2013 at 1:17 am


SpecialK82

I will be sending along my donation. I was going to write to you privately and ask if you've considered getting a short interview with Laura Hillenbrand. But I see that you are discussing getting on set with Angelina Jolie, which is crazy good!

I'm just thinking out loud here, and this is a huge reach – but if you can get in with Laura H. and/or on the movie set – how powerful would it be if the documentary is released at the same time 'Unbroken" comes out? That way the celebs or possibly Laura H would mention the documentary at the same time that they are being interviewed about the movie??

I realize that Laura H may not have anything at all to do with the movie as often happens, but i would also think that her story is generating some public interest in CFS as her health was mentioned and treated respectfully in interviews when the book came out.

Fantastic idea! :thumbsup::thumbsup::thumbsup:

That's going to take some more $$$ though – let's keep pushing this total up! $12,561 now with 12 days to go.

This movie has the potential to be the most powerful advocacy tool we've ever had. Let's not mess about – let's throw some money at it! I think we raised $1,000 in an hour or something last night. :)

5150 June 27, 2013 at 2:11 pm

best wishes in your endeavor, and thank you (and Nicole) for your effort.
1. does your girlfriend show any symptoms? truly hope not…
2. is there a reason your documentary is called The Blue Ribbon?

If Angelina Jolie becomes vocal about ME during the PR leading up to the movie's release, then continues as an avid spokesperson afterwards, we will have hit the jackpot! We need to be adopted by star power: Get this fight on to "Front page News" , and let the US Govt begin explaining why it is lagging.

Nielk June 27, 2013 at 2:55 pm


5150

If Angelina Jolie becomes vocal about ME during the PR leading up to the movie's release, then continues as an avid spokesperson afterwards, we will have hit the jackpot! We need to be adopted by star power:

As we all know, Angelina Jolie is good at adopting.

John H Wolfe June 28, 2013 at 12:12 am

Awesome idea – good on you folks and good luck with this project! :)

Sasha July 10, 2013 at 2:51 am

The Kickstarter deadline is up and the project is fully funded, including one of the 'stretch' goals of the set of 'Unbroken' (Angelina Jolie!) or Europe, to be voted on by those who donated.

Total $17,773 by 214 backers. Well done to Ryan and Nicole and to everyone who donated!

Sasha July 15, 2013 at 4:42 am

People have been asking how to continue to donate now that the Kickstarter campaign is over, and here's how:

http://cfsdocumentary.weebly.com/index.html

Snow Leopard July 19, 2013 at 6:10 pm

Big thanks to Ryan and Nicole for doing this.

Sasha July 21, 2013 at 4:25 pm

Update from Ryan on his Facebook page on where they're at with the filming:

https://www.facebook.com/CFSDocumentary/posts/603967489634110

Nielk July 21, 2013 at 4:33 pm


Sasha

Update from Ryan on his Facebook page on where they're at with the filming:

https://www.facebook.com/CFSDocumentary/posts/603967489634110

Thank you for this, Sasha.
It sounds like a great start. I'm very excited about this!

Sasha July 31, 2013 at 1:12 am

Email update from Ryan to his Kickstarter supporters:

Thank you so much for supporting The Blue Ribbon: ME/CFS and the Future of Medicine. You stepped up to help make this project possible.
We just completed a life-changing ten days on the West Coast talking with some of the most brilliant minds in this field and visiting the homes of very ill patients. As we go back over the more than 20 hours of footage we've recorded so far, we can't help but be overwhelmed by the power of the voices we've captured.
We can't wait to get some rest, regroup, and hit the road again for our East Coast tour.
If you would like to keep in touch with updates about our production, please "Like" us on Facebook. https://www.facebook.com/CFSDocumentary
Health and Happiness,
Ryan Prior and Nicole Castillo

Nielk August 1, 2013 at 2:15 pm
Nielk August 3, 2013 at 9:50 pm

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/

Nielk August 13, 2013 at 1:57 pm

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

Nielk August 14, 2013 at 2:56 pm

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.

Nielk August 15, 2013 at 10:24 am

The Blue Ribbon: The ME and CFS Documentary Project
A huge thank you to Pandora Org for their generous contribution of $2,000 and for the possible inclusion of the film in their upcoming national public service announcement. To join the momentum of our second fundraising wave, click here:

http://www.cfsdocumentary.weebly.com

Thank you Pandora!

Sasha August 22, 2013 at 6:55 am

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).

Nielk August 26, 2013 at 1:02 pm

The Blue Ribbon: The ME and CFS Documentary Project
CHECK OUT Emma's Story. She offers a great dose of both optimism and realism as she faces ME/CFS, along with thoughts about what she could have possibly done differently to prevent the illness.

http://cfsdocumentary.weebly.com/1/post/2013/08/emmas-story.html

Sasha September 17, 2013 at 3:33 am

Sneak peek of what they've done so far:

Nielk September 17, 2013 at 7:00 am

Wow. I can't wait to see the full finished documentary!

Sasha September 17, 2013 at 7:11 am


Nielk

Wow. I can't wait to see the full finished documentary!

It had me crying after only 3 minutes!

Valentijn September 17, 2013 at 1:27 pm

Very nice – I like how they juxtapose the tragic aspect of patients' existence with the more hopeful aspect of research.

Sasha September 17, 2013 at 2:35 pm


Valentijn

Very nice – I like how they juxtapose the tragic aspect of patients' existence with the more hopeful aspect of research.

I agree – don't want to be crying for 90 minutes!

It's very skilfully done – can't wait to see the whole thing.

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