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 proposes we are each the key to solving ME/CFS
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:
Getting Personal
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)
Dear Cort,
How can we participate in this exciting new program?
I think we’ll find out pretty soon. This looked like an introduction to me and we’ll get the nitty gritty later. It will certainly be posted here
Suzanne just posted that we’ll know over the next couple of weeks.
It’s the same thing I have been trying to figure out how to do.
Klimas’s 23andME Research Tribe- is the name of a Facebook group of members with ME/CFS (SEID) who are committed to paying for the 23andME test to be done and sharing the results with Klimas and her researchers.
Join the group today for more details.
Nancy Klimas will do her magic with the data..
Sounds as if this is, exactly the kind of thing, Suzanne is talking about.
It sure does. My bet is that she’ll show up at Dr. Klimas’s. We shall see!
Done. Have been counting the seconds for this group effort with 23 to form since my Yasko test in 2007. Magic science is in the air — and on the ground.
I tried to find the Facebook group, but the search came up empty. Could someone post a link? I’m willing to do the test.
The Facebook group is:
https://www.facebook.com/groups/1574135519528641
That’s fantastic! Go figure… I had just ordered a 23 kit and sent the sample in on Monday! Thanks for sharing the FB site- I’ll sign up. Can’t wait to see what happens next!
I am a patient of Dr. Rey. Will she be participating in this too?
I assume she will be…She’ll probably try to recruit you 🙂
I am hoping that alliances will be the catalyst to move ME/CFS/SEID research forward. Division is a thing of the past. Alliances will be the key to the future. Divided we fall. United we stand. Lets stand together and build strength in numbers.
Count me in. My sis and soon her boys are/will be patients of yours. With our family there has to be a genetic link. I have my 23&me data and don’t mind sharing it. My sis is in your most current research study and it would be interesting comparing our data. This data should provide some clues to the complexities we all face. Happy to help however I can.
Issie
They should do a study on your family 🙂
Issie, yes, there are multiple cases in my family,too. And they began in different ways – injury, virus, and slow development. So, it seems important to find the common denominator.
Issie, yes, there are multiple cases in my family,too. And they began in different ways – injury, virus, and slow development. So, it seems important to find the common denominator.
I have great respect for Suzanne Vernon–she is intelligent, caring and dares to think “outside the box.” I am encouraged that she is forging a new path. I suggest we back her efforts!
Suzanne is so invaluable to the me cfs community when I heard dhe was stepping down I.was like nooo but glad to. See she is still helping.out
There are at least five in my extended family, that we know of, who have ME/CFS/SEID. I think every single one of us would be ready and willing to be a part of this type of effort. Thanks for keeping us informed, Cort.
My son and I developed CFS nearly simultaneously in 1984. Once things leveled off after he’d been sick for a while, it hit his gut as well as the fatigue issue the hardest. Mine is all over the place and now with aging issues, its impossible to separate the differences.
I can’t wait to see how Suzanne attacks this issue. Its an attack on a system that has ignored us for far too long. I hope I live long enough to see it.
So excited to see what Suzanne plans to do next. Yes…it’s about time to enlist this vast army of volunteers more than willing to participate and do our part to get our lives back!! There’s an old saying, “A new broom sweeps clean.” We need to take a new tack at this thing. I’m here…I’m willing… Put me in, Coach Vernon!!
Now you’ve got me excited Bottsie!
🙂
Sounds like a funded version of Mendus.
🙂
Good. Let’s do this.
I’m a fan of direct to consumer testing and hope generative decision support systems with robust generative capabilities can be added. The focus, I hope will be in directily empowering people instead of directly empowering industry.