We are putting the finishing touches on a creatively disruptive approach for people-powered research. Together we will get to the bottom of ME/CFS. Suzanne Vernon
We were talking subsets at an event about five years ago. Suzanne turned to me and a friend and asked us to tell our stories. As our very different stories spilled out she said, you see – you have very different kinds of chronic fatigue syndrome. She thought ME/CFS was littered with different types that impeded our ability to understand “it”. The truth is that until “it” disappears it’s going to be difficult for us to make progress.
Suzanne Vernon proposes in order for that to happen, we – each of us – must emerge. In a recent post she announced she’s partnering with pioneers in personalized medicine and computational biology to uncover not the true face, but the true faces of ME/CFS.
The outgoing Research Director of the SolveME/CFS Initiative Suzanne Vernon said she would be back – and she is. She said she was going to be a creatively disruptive influence in this field and it looks like she will be.
Nobody has tackled ME/CFS from the inside out – from the patient to the group – before. It’s a new way of looking at ME/CFS. I’m not surprised that she’s at the forefront of it.
Check out a recent message from Suzanne Vernon:
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)
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