Speeches from the front lines of #MillionsMissing: Ryan Prior

My name is Ryan Prior. I’m a filmmaker and a journalist and an entrepreneur from Atlanta, and I’ve come here for this protest.
October 22, 2006 was a day that my life completely changed forever. I came home from school and I was too ill to hold my head up. It was a similar story to most of the people here today. Within a week or two I was forced to drop out of high school altogether. I was a student council president, I was a high school cross country team captain.  I studied abroad at Oxford. I had intentions to go become an Army Ranger. But this disease took all of that away from me.
But I’m one of the lucky ones. Although I spent a year, or one of two years, unable to go to school at all, I was able to recover. I take 20 pills a day, give my self a shot once a week, and I get an IV treatment once a month, and about 85% of the time I’m able to function at about 85%. But the treatments are extremely costly and for the rest of my life most likely I will have to have parents who cover most of my medical expenses because I can’t pay for it myself, because I can’t work in a job that pays enough money to pay for the treatments that I need to be able to function at all as a normal person.
As a filmmaker and as a journalist, I felt that I had to do more.  So I started a company and built a team and raised hundreds of thousands of dollars to make a film. I traveled all across the country interviewing doctors who treat ME/CFS. People at Harvard, Columbia, and Stanford. We interviewed hundreds of patients and we had donors and consultants and advisors and a community that arose around this film from about 15 different countries and we’ve shown this film in 35 different locations worldwide.
We’ve had sold out screenings at Stanford and at Oxford and in Amsterdam. And the film has sort of taken on a life of its own. But because this disease is so forgotten, and only about 5% of medical schools teach anything remotely helpful to medical students about this disease, the NIH only spends 5 million dollars a year researching this disease and this is a forgotten plague. Until we fully acknowledge that as a country and as the world community in general, 1 million Americans and 20 million people worldwide are going to continue to suffer.
And the only thing worse than endless suffering is endless suffering in silence. And that’s what’s going on right now. And that’s why we’re here to protest, to join arms, and really to storm Capitol Hill to tell our elected officials what needs to happen. We need the NIH to take this disease seriously, to put it into the neurological category of research, and we need parity in funding with other diseases of equal magnitude and equal prevalence and equal severity in society.
It’s a simple ask. As Americans we all believe that we’re equal. Any citizens in any democratic society across the world, we believe that our voices should be heard by those who represent us. Right now the case is that they are not, and I hope that today marks a brand new change, and from now on things will be different, that our voices will be heard, and that we will no longer suffer in silence.

Facebook
Twitter
WhatsApp
Email

1 thought on “Speeches from the front lines of #MillionsMissing: Ryan Prior”

  1. Awesome speech dude! Wish I could have been there, but felt the energy just from reading your words. Do you mind if I quote some of your speech in a blog piece I’m writing? It will be on 25pillsaday.com…I’m trying to do a write-up and get some coverage on protests from every city on that day. Thanks! And keep up the good work. 😉

Comments are closed.

Latest News

comic book background with yellow and blue colors with dots. In the center is a starburst with the words 2024 advocacy highlights. the middle is surrounded with exclamation marks.

Why You Should Gift to #MEAction this Season

As #MEAction prepares for the year ahead, I’m thrilled to share with you a few highlights from the incredible advocacy projects our staff has undertaken this past year.  As you prepare for the holidays, I humbly ask that you consider making a gift to #MEAction today to keep our work going strong! Donate We Organized

Read More »
burnt red square. there is a quote bubble in the center of the image with the words: Take Action Today: Support Keeping Telehealth! Surrounding the bubble is a megaphone in the bottom left corder and lightning bolts in the top right corner. and starburst as well. the meaction logo in the bottom right corner.

Support Keeping Telehealth – Take Action Today!

Expanded telehealth coverage for Medicare is set to expire at the end of this year, December 31st! Learn More #MEAction knows losing expanded telehealth will be a problem for many in our community and the wider disability community. While this action focuses on keeping the expanded Medicare coverage for telemedicine, we know that what Medicare

Read More »

#MEAction Scotland volunteers in Scottish Parliament

Volunteers from #MEAction Scotland and Long Covid Scotland talked to over 60 MSPs (Members of the Scottish Parliament) at an Information Stall in the Scottish Parliament from 5th-7th November. Ben Macpherson MSP for Edinburgh Northern and Leith sponsored the stall on behalf of  #MEAction Scotland as we aimed to make MSPs aware of the desperate

Read More »
Scroll to Top