Sunday, July 7, 2013

Interview with Ryan Prior
and Nicole Castillo
of The Blue Ribbon

Journalist Ryan Prior and filmmaker Nicole Castillo didn’t have an aha moment that prompted them to make the documentary, The Blue Ribbon, about ME. Their interest, which marinated over a period of months, began when Prior, who’s had ME since October 2006, wrote his first piece on the subject for the USA Today College blog in October 2012, “two weeks after Ian Lipkin’s nail-in-the-coffin study on XMRV,” he recalls. The response to Prior’s piece was overwhelming: The average USA Today college story generates 30 Facebook likes; this one got 500. 

“I had touched such an untapped reservoir of pain,” Prior, 23, says evenly. Some of the patients who weighed in, he says, had contemplated suicide, and Prior realized that more needed to be done about ME. Advocates started contacting Prior, and he began his immersion into the disease.

Social Justice
For her part, 23-year-old Nicole Castillo, who doesn’t have ME, has worked on feature films and in television. Currently, she serves as a TV computer graphics technician and floor director. But her passion is social justice. After volunteering at a men's homeless shelter, a daycare center, a nursing home and even spending her spring break senior year living at a convent, she knew she wanted to make medical and social-justice documentaries and was itching to start. She just needed the right subject. And she found her inspiration closer than she could have imagined, in Prior, who is also her boyfriend.

“Seeing Ryan’s hardships with ME/CFS was heartbreaking,” Castillo says. “It made me feel so helpless myself. With little understanding of the bouts of brain fog, exhaustion and inability to speak, it was devastating to not be able to help him.” At the time, Prior and Castillo were students at the University of Georgia, and Prior was having trouble keeping up because of ME. In fact, he was about to drop a class he needed to graduate to complete a dual degree. “Because he has such a supportive family, adaptations in his schedule and lifestyle and a lucky bout of timing, he prevailed,” Castillo says. Prior graduated with his dual majorswith honors.  “Unfortunately," says Castillo, "this is not the norm for so many patients.

“After experiencing a loved one go through all of that, I refuse to stand still when I have an opportunity to be a voice for the ME/CFS community,” she says. “I will do my very best to make a documentary to do justice to those in despair, and demonstrate a pain that is far too unknown to the mainstream. I want to make a documentary for the public, politicians, journalists, researchers and doctors to display the grand need for support.” 

Castillo is overseeing production, audio, camera and editing of the film. “I want to capture the spirit of what Ryan is trying to get across,” she says. 

West Coast/East Coast Filming
Prior admits that he’s had a lot to learn about ME—and his education from the patient community has been swift.  Even though he’s lived with the disease for nearly seven years, he, like many patients, used to accept the Centers for Disease Control’s (CDC) definition. At only 23, he hadn't been aware of the long, sordid history of the disease until he began writing about it.  "But I did realize a much more national discussion needed to take place," Prior says. "The goal of the film is to bring more awareness to this disease.” 

Prior and Castillo want their 90-minute film to resonate with the entire patient community—and at the same time to resonate with the public at large.  The two will spend 10 days conducting interviews on the West Coast, and then move on to the East Coast.  Among others, they hope to interview Dr. Andy Kogelnik at the Open Medicine Institute, Gunnar Gottschalk and Dr. Daniel Peterson at Simmaron Research, Staci Stevens and Dr. Chris Snell at the University of the Pacific, Dr. Judy Mikovits, Dr. Nancy Klimas, Dr. Ian Lipkin and perhaps government officials. “There are no plans to interview the Whittemores yet,” he says.

They also plan to meet with a few patients in the 25 percent—the sickest, bedbound patients.  Both Prior and Castillo are concerned, however, that the interviews and the technology they’re bringing in their homes will be problematic for the patients, and they want to minimize their distress.

Medical Fellowships
In addition to making the film, Prior and Castillo hope to raise $50,000 for 10 medical students to do eight-week fellowships with ME experts. “We hope they will help train the next Daniel Peterson or David Bell,” Prior says.

Following Dr. Jacob Teitelbaum’s ME protocol, Prior is highly functional now.  That wasn’t the case when Prior, a serious soccer player and runner, first got sick and had to drop out of high school. Now, Prior can even exercise—every other day.  When he tries to exercise daily, however, he crashes. 

Raising Money
If Prior and Castillo raise enough money, the duo may continue filming in the U.K. and/or Hawaii, where the film Unbroken, based on ME patient Laura Hillenbrand’s book of the same name, is being directed by Angelina Jolie.

Where they go is up to the public—and funding. After the Kickstarter fundraiser for the film ends July 10, Prior and Castillo will ask patients to vote on where they should go next. “Aristotle said democracy was mob rule, but we feel that the patients have bigger and better ideas than anything Nicole or I can come up with,” Prior says.

If you’d like to contribute to The Blue Ribbon, go to Kickstarter by July 10, or donate to the film’s PayPal account after the 10th. 

7 comments:

  1. Delighted to be a supporter of these two young people as they take on an ambitious but hugely worthwhile project!

    I have been ill with ME since March 2012 and have now lost my job and much of my mobility. However there is a fantastic online ME community who have given me the advice and support so lacking from conventional sources.

    I think the time is ripe for change in how ME is treated and regarded by medical professionals and the general public. This documentary could not be done at a better time.......

    I am really looking forward to seeing the results! :) Go Ryan and Nicole!

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  2. They should interview Ken Lassesen in Bellingham, WA -- he first became ill in the 1970's, then went into remission until 1999, was well until 2012, relapsed, and is now in remission again.

    There IS hope. He can be found on Facebook and was also featured recently on Cort Johnson's blog.

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  3. Not about ME. ME patients do not use ME/CFS. CFS patients do. Another hint: there is no CDC ME definition. Using the muddled, misguided ME/CFS or misrepresenting CFS as ME continues to misinform and adds to the confusion. Patients unfortunately go along.

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  4. Allison Haynes MayJuly 8, 2013 at 5:53 PM

    Thank-you Ryan and Nicole. I'm in Canada & have had M.E. since 1989. The lack of public & medical awareness, throughout all these years, has been unbelievable. I wish you the best of luck with your film. May I suggest you promote the use of the term M.E. over the use of CFS ? It minimizes the illness the minute people hear the name. They think "I'm tired all the time too. Who isn't ?" As you know, it's not just "fatigue", and it's not a "syndrome", it's a severe, life-changing neurological disease. The term "chronic fatigue" is merely a description of one symptom, which can occur due to many causes : hypothyroid, low iron, depression, etc. and it can have absolutely nothing to do with true M.E. We who live with M.E. would appreciate it so much if the proper scientific/medical term were used and promoted. (CFS is gradually "leaving the building" as a name for M.E., world-wide.) Thank-you again. (P.S. I am available if you wish to speak to someone who has had it long-term and gone through many levels of severity, and has had many good & bad experiences, which I think can be of help to others.) All the best to you.
    Allison Haynes May (you can find me on Facebook)

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    Replies
    1. Alison has hit the nail on the head here - and I too prefer the term ME. Having said that my doctor (in N.Ireland) talks about Chronic Fatigue Syndrome because that is the name the NICE guidelines use. She is not adverse to the term ME however, but says her hands are tied she can use only CFS.

      I also went to a private consultant and he described my illness as ME (CFS) - he told me I had totally classical symptoms with post exertional malaise being a dominant feature of my condition.

      I am sure there are many UK (and elsewhere) patients diagnosed with CFS who do indeed have ME and I would prefer not to alienate those folk by denigrating the CFS name as some in the ME communty do. CFS is an inadequate name for sure - but many CFS patients DO have ME.

      I guess a documentary cannot be made without touching on this naming dilemma. Some-one said once to me, that calling ME "Chronic Fatigue Syndrome" is a bit like calling Alzheimer's "Chronic Forgetfulness Syndrome" - which would totally belittle the real nature of the condition. This is the dilemma we have.

      I fully support the move to ensure that ME is not described as CFS. Indeeed CFS is a totally inadequate way to name such a devastating illness that has robbed me of my livelihood and so much of what I used to do.

      However I think things are changing now and as more scientific biomedical evidence emerges that the name Chronic Fatigue Syndrome will be abandoned in favour of a name (or names) that better describe the true nature of this illness.

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  5. thank you, ryan and nicole, for this important documentary you are undertaking. and for being so caring in how you do it.

    thank you, mindy, for interviewing them and reporting on it all.

    best,
    rivka

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  6. "But I did realize a much more national discussion needed to take place," Prior says. "The goal of the film is to bring more awareness to this disease.”

    The CDC and the UK have been MORE than "aware" and have fought us tooth and nail to call it just fatigue and psychological. Many documentaries have been made in the last 25 years to increase "awareness". We need a documentary to light a fire under the patients and doctors to dare to openly fight CDC and to stop going around in circles with their "awareness" campaigns. As long as CDC tells the world we are just crazy and tired, we have no authority, no matter how loud we complain. We must invade Congress with our demand that they require CDC to do their job, or we can stop wasting our time and energy.

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