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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the