November 1, 2007 was my 1st day as Scientific Director of The CFIDS Association of America; May 30, 2015 was my last day. The 2766 days in between have been an amazing journey.
It has been an honor and privilege to meet, get to know and work for this patient community. I’ve made many dear friends who have welcomed me into their lives that have been so dramatically altered by ME/CFS. No professor, institution, laboratory, organization or research study could have taught me what I learned from this patient community.
They have shown me that each person stricken with ME/CFS is affected differently. Each person has a unique story about how they got sick — travel to Africa, surgery, mononucleosis in college, slow and insidious. The stories are captivating and devastating. Theirs are journeys into the unknown. What helps one person makes another person worse. Experimentation comes naturally when you have ME/CFS. ME/CFS has snatched and transformed so many lives — too many lives. Unfortunately, despite gallant attempts by a handful of clinicians and researchers including myself, there is little that has been done to change this unconscionable situation. This has left an indelible mark and deepened my commitment to make ME/CFS personal.
For those of you who know me, you know I love to connect dots to solve complex problems. For me the dots are data, and for years the challenge has been getting the data! Now technology and direct-to-consumer testing have empowered each of us — healthy and sick — to be the keeper of our own data. It is then our decision what to do with these data, who we want to share it with, whether we want to bring it together with others to reveal patterns, to reveal what’s important for recovery, to reveal causes of our maladies.
I have partnered with pioneers in personalized medicine, direct-to-consumer testing and computational biology. We are putting the finishing touches on a creatively disruptive approach for people-powered research.
Together, each and every one of us, we will generate our own data. We will decide how our data are used. Together we will get to the bottom of ME/CFS.
Get ready. ME/CFS is about to get personal.
Suzanne D. Vernon, PhD (aka Rogue)