The Stanford Medicine X conference is offering a scholarship to attend the April 28-29, 2018 conference, and receive funding for airfare, hotel, and meals. The ePatient scholarship is open to both patients and caregivers who are engaged or empowered.
Applications are due Nov. 1 at 5 p.m. PT (8 p.m. ET).
Ryan Prior talks about his experience at the Stanford Med X conference, and encourages the ME community to apply for the grant. Prior is a board member of #MEAction.
I attended the Stanford Medicine X conference in 2014, 2016, and 2017 as an ePatient Scholar. At the most recent conference, just last month, I was privileged to give a talk on the main stage about my journey producing the film Forgotten Plague and becoming an advocate for ME/CFS.
I’d like to strongly encourage others in the ME/CFS community to apply for the ePatient Scholarship, which pays for airfare, hotel, and meals while you attend the conference. An “ePatient” is an “engaged” or an “empowered” patient, someone who might be considered a healthcare rebel. It’s someone who doesn’t accept the status quo. And through the conversations the past few years, Medicine X has expanded the definition of ePatient to include caregivers. I’ve often heard from caregivers who feel that their experience assisting a sick family member is hard to communicate. That’s why Med X is including them in the conversation, so that along with doctors, scientists, entrepreneurs, and tech people, we can all learn together and forge a healthcare system that is more inclusive of everyone’s needs.
What I love about Med X each year is connecting with a tribe of other chronic disease patients, of those suffering from multiple sclerosis or cancer or diabetes. We learn that, in so many ways, our fates are interconnected, our concerns are mutual, and our suffering is often the same. That’s the power of having inclusive conversations with those from across the healthcare system. And what’s unique about Med X is that it’s a conference that puts patients literally front and center. Not only are the primary speaking slots reserved for patients but the front rows of event hall are roped off for patients. It’s because patients are who matter most in the healthcare system. And it’s patients’ voices that need most to be heard.
Med X is a conference that celebrates the human element, of empathic voices, of mutual shared experience. As I was drafting my talk this year, I was encouraged to talk about my hardest experiences: about my deepest fears, and greatest hopes. For me, I think my greatest fear is that ME/CFS could rob me of my chance to be a father. Behind the journalism, the filmmaking, and the desire to change the world, it’s really been the simplest of dreams that has felt the most fleeting.
As I spoke at Med X this year about my dreams and my fears, I felt an atmosphere of love and warmth. It’s a place where speaking the most difficult truth is accepted and encouraged. I think all of us who’ve become part of the Med X tribe feel a certain spiritual connection to the place and to the community, as though this experience is as sacred as a church or a mosque.
I hope that all in the ME/CFS community could have a chance to learn from the innovative leaders who come to the conference each year, who have game-changing ideas. Companies are launched at Med X, and many of Med X’s core leaders were part of the White House’s Precision Medicine Initiative.
Act quickly! The deadline to apply is Nov. 1. I’ll be applying for my fourth year, and I hope you’ll be able to join me as we give voice to ME/CFS patients and help change the future of healthcare.
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