In less than a month I’ll be flying to Silicon Valley for Stanford University’s Medicine X conference, one of the premier medical conferences in the world. I have been awarded an ePatient Scholarship and feel very honored to be giving a 90-minute workshop presentation called “Health Advocacy in the YouTube Age.” The workshop will highlight my experience as a film producer over the past year and will empower the audience to use film, video, and visual media to bring attention to the most pressing and overlooked health challenges of our time.
Held this September 5th-7th, the conference is dedicated to exploring “how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care.” And it has an extraordinarily exciting perch in the world of social media. According to MED X:
In 2013, Medicine X broke all records for the most tweets per day from a health care conference, besting even TEDMED and HIMSS, according to analytics data firm Symplur. More than 3,500 participants engaged with Medicine X via Twitter, making it the most talked about conference of the year with nearly 27,000 tweets in three days.
I think it is vitally important to move ME/CFS into the mainstream of medicine and MedX is the best place to be a part of this innovative, world-changing conversation. The conference lives and breathes on Twitter and social media, which is the type of advocacy the ME/CFS patient community excels in most. You can watch all the main stage presentations streaming live on your computer and you can tweet about the dialogue as it unfolds.
I want to challenge each and every ME/CFS patient to join this conversation September 5-7th. Watch each presentation carefully, learn as much as you can, and tweet as much as you can. LET OUR VOICES BE HEARD! This is the chance for a major coming-out party for our patient population. We already know that Stanford has become one of the premier institutions in the world for researching and treating ME/CFS. Let’s build on that momentum and build bridges with many of the world’s leading minds in health innovation. Conversation and dialogue are a two-way street. If you engage with the speakers, they’ll engage with all of us. And the rising tide will lift all boats.
And these speakers are going to be absolute blockbusters. You’ll be so inspired.
–Charles Ornstein, Senior Reporter, ProPublica will talk about harnessing data to better involve patients
–Daniel Siegel, MD, of UCLA, will talk about “the art and science of integration in the promotion of health”
–Barron Lerner, MD, PhD of NYU, will give a “unique perspective on medicine, bio-ethics, and the doctor-patient relationship.
Stanford University and Silicon Valley hold a special place in my heart, the ME/CFS community, and, I believe, in the future of human progress. I was once a creature of Washington, working in Newsweek/Daily Beast’s Washington bureau. But I felt compromise and collaboration were dirty words in Washington. Very little was getting done. It’s not a mystery that this is a similar fate for ME/CFS advocacy in Washington as well. In an era of increasing budget cuts and legislative deadlock, our voices are often being ignored.
Yet Silicon Valley is a different place, a fresher place, a more creative place. Silicon Valley uses technology in a democratic way that Washington has forgotten. We’re all welcome. It’s a brand new world. We might not be capable of marching on the Mall, but we sure can tweet. So come West with me to a land of collaboration, teamwork, and inspiration. ME/CFS is already alive and well at Stanford. Now, as the premier minds in health descend on Silicon Valley this September, let’s make ME/CFS the newest and brightest blip on their radar screens.
I have the unique privilege of being the very first ME/CFS patient chosen for this ePatient Scholarship, an honor I take very seriously. I sincerely hope that I am just the first of a long line of engaged ME/CFS patients who will be chosen to represent our emerging patient population at Medicine X in the coming years. I thank my friend and fellow Blue Ribbon Foundation board member, Joey Tuan, for encouraging me to apply for the scholarship. And I sincerely hope that he might just be the next ePatient Scholar from our community to address the Medicine X Conference on his successes in e-patient engagement.
So let’s move forward together. Sign up for the Global Access Program and let’s MAKE SOME NOISE!!