I am so excited and honored to partner with the Bateman Horne Center to establish a world-class research program that will bring science-based medicine to ME/CFS patients. Suzanne Vernon
The Czarista has landed. As promised Suzanne Vernon is back in the ME/CFS research field. She’ll be working with one of our top physicians, Dr. Bateman. One of our foremost creative disrupters in the research field teams with our of our top M.D.s – that’s a nice fit, and it bodes well for the newest major addition to the ME/CFS field – the Bateman Horne Center of Excellence.
Dr. Bateman has found a powerful partner to help bring her dream of building a major ME/CFS and FM Center to fruition. Suzanne Vernon, after all, has taken every ME/CFS program she’s been at to the next level.
Creative Disrupter and Now “ME Research Czarista”
Suzanne Vernon is a “creative disrupter”. Through about a dozen technical papers, she and Elizabeth Unger laid the groundwork for applying clinical, genetic and gene expression data to populations in the 1990’s. She got Bill Reeves, an epidemiologist, to sign onto the first attempt ever in a medical research field to do that at the CDC. The Pharmacogenomics project that resulted, got Gordon Broderick into the ME/CFS field. From there he took that work to Dr. Klimas’s Institute for Neuro Immune Medicine at Nova Southeastern, where it’s formed the basis for much of her research.
Suzanne Vernon has taken every place she’s worked at to the next level…
Vernon’s move to the Solve ME/CFS Initiative resulted in the first Biobank for ME/CFS, a remodeled research program focused on collaboration and data sharing, a string of creative studies, a great deal of NIH funding and almost a dozen new researchers studying ME/CFS – some of whom she got to study it, for the cost of shipping them samples. Included among those figures are Lasker Award Winner Michael Houghton and Dr. Unutmaz.
Suzanne Vernon got into this field because she wanted to make a big difference. Twenty years later she’s still enrolling others in that possibility. That’s no small achievement in a field she was told would be a “career -ender” for her. She told me that researchers get hooked by three things in ME/CFS: the opportunity to make an extraordinary difference in a field, the ability to help a lot of really sick people, and simply the sheer fascination of the disease.
This is a disease that does things no other diseases do. Whoever figures it out is going to make waves. Take your pick – help a lot of people; be a leader in a field; be the one to figure out the big mystery – any of those objectives are like catnip for the right kind of researcher.
“I’ve had great success recruiting innovative partners and rock star scientists into ME/CFS research. Now Dr. Bateman and I will establish Bateman Horne Center as a center of excellence for research and clinical care.” Suzanne Vernon
She mentioned about how jazzed one of the researchers she enticed into this field is. This researcher, one of the “rock-stars” she mentioned in her blog, works at one of the top labs in the country. In fact it may be the top lab in his field. She said he is not just interested, but is actually excited, as in really excited, about the opportunity to make a difference in this field.
She said he and others, have applied for major NIH grants, to study ME/CFS (We should know soon about them.). It’s hard to imagine that with these kinds of researchers knocking on the door, that something is not going to shift.
Dr. Lucinda Bateman
One of our most respected and busiest ME/CFS/FM physicians, Dr. Bateman has done just about everything anybody in this field can do. From CFSAC to the IACFS/ME, to producing training video’s for the CDC, to participating on the IOM panel, Dr. Bateman has been there. She’s done everything she can to support the field.
Dr. Bateman’s big move appears to be working out.
About a year ago she decided she’d had enough of working in her small and vital but perpetually overloaded clinic with its precarious finances. She realized she was never going to be able to make the difference she wanted to make in that clinic. She got tired, in other words, of playing small ball. She decided to play big ball – to really go for it.
Instead of a small Clinic she would create a major ME/CFS and FM Center – A Center of Excellence. That obviously took guts. It could have flopped on its face – but it hasn’t. Suzanne Vernon’s appearance as Research Czarina (she got to make up the title) indicates the COE is doing well.
Their first task – create the first diagnostic tests for this disease.
“If we are ever to mainstream medical care for the millions who suffer terribly from this disease there must be diagnostic tests. Dr. Vernon’s experience in identifying biomarkers, establishing biobanks and cost-effectively gathering large amounts of real-life, real-time data will close in on this reality.” Dr. Lucinda Bateman
Bateman Horne Center of Excellence
The Bateman Horne COE is a big deal. So far as I know we have two other COE’s integrated clinical and research units, (Dr. Klimas Institute at NSU and the Whittemore Peterson Institute) that are working full-time on ME/CFS and/or FM. Dr. Montoya’s ME/CFS Initiative at Stanford and Dr. Enlander’s clinic at Mt Sinai and Dr. Natelson’s also combine research and medicine. A privately formed COE that works could support others in making the move.
I would love to see Peter Rowe join forces with Bateman and Vernon. He’s a superb researcher/doctor with a creative bent. He’s got a waiting list an arm long. Johns Hopkins appears to tolerate him without giving him the support he needs. He’s in much the same place that Dr. Klimas was in at the University of Miami. Plus he’s our only expert on pediatric patients. Someone needs to either give him a lot of money or snatch him up.
We’ll hear more over the next couple of weeks about how the Bateman Horne COE is going to look. For now, we know researchers from the Jackson Institute of Genomic Medicine (Unutmaz probably) and the Columbia University (Lipkin//Hornig team apparently) will be collaborating with them.
Let’s wish all of them luck in producing a strong and vital ME/CFS and FM Center of Excellence.
- Read Suzanne Vernon’s blog here
- Read the Press Release here
- Visit the Bateman Horne Center website here
Having a 3rd COE is GREAT NEWS!
Fantastic! Thanks for letting us know & placing it in context.
There are already numerous diagnostic blood tests plus other diagnosis procedures already on the market they are ‘undiagnosed’ Ehlers Danlos Syndrome type(s)
I think this is just about the most exciting news I have heard about this awful illness in THIRTY years.
I hope we hear even more exciting news soon….we may!
Yes!!!!!
Thank you, Cort, for providing these messages of hope that competent people are out there at least trying to find solutions. That means quite a lot to so many that languish in misery not knowing otherwise there could ever be relief from this.
Bless these researches and I hope to see the day when Dr. Vernon, Dr. Bateman, et. al. receive Nobel Peace prizes. They would be well deserved if so many lives could be made livable again.
I wish I was healthy, young and intelligent enough to be one of these researchers that are fascinated to solve this unique and life-altering illness and want to leave their mark in life of bettering it for others. If there is anything in our “system” of research that squashes the enthusiasm of young scientists with this mind-set, then our system needs to be retooled.
How well said Greg!
Want to hear something really encouraging? I just talked to Carol Head. The Solve ME/CFS Initiative got 60 resumes for it’s Research Director opening. She said they were all PhD’s with excellent resumes. The last three standing included someone from Harvard…
She said she told this is not a place to make money. It’s place where you have to want to take a big fight that makes a difference. She said many of them were burning to get out of academia and make a difference. She said they were fascinated by ME/CFS.
I think we will see more Suzanne Vernon’s as time goes on!
Thank you, Cort, for this wonderful news and for delivering it in your straight-shooting & humorous way! You’re absolutely right about Dr. Lucinda Bateman: She will never give up on us or this disease! She has a goal in front of her that drives her until she succeeds. Best wishes to her and welcome Suzanne Vernon!
Glad you appreciate the humor – gotta to get a little humor in there at times..:)
Dr. Bateman is tough! One person who knows her told me she’s not happy unless she’s taking on something controversial 🙂
Thanks for reporting on this. I have been following the BHC development the past several weeks. I am just down the road from the monthly meetings with guest speakers, and have been trying to get there in person. Not many with ME/CFS show up – the speeches are recorded and available online. Hundreds view them. What Dr. Bateman and her group is doing, and have done through OFFER, is astounding.
Attracting new doctors and/or practicing doctors has been a problem. No one local wants to get involved. Keep spreading the word. Somewhere, there must be young and motivated, up-and-coming researchers and physicians who will join this effort. The tipping point will come. It is shaping up. Those who have already dedicated their lives to this are courageous trailblazers.
They are sooo courageous. I think many of them just feel that they cannot back away from these patients. I think of Dr. Peterson all by himself in Incline. Dr. Cheney left early – and then it was just him. They hated him because he put Incline on the map in a bad way and yet he stayed and stayed and stayed.
His peers surely thought he was crazy! That’s really something.
How about dr. Younger in alabama?
If he can get a doctor in there he would definitely have a COE. The fact that he is doing so much research treatments suggests it is near a COE in function – that’s for sure.
This is so exciting! Wishing them all the success that we deserve.
That’s what keeps me going: Hope.
Thanks to all the researchers who will not give up before answers are found.
Thanks to all the researchers who did not listen when others told them they were wasting their time and career. The bold and innovative will eventually find the answers.
Yes, Katie! Well expressed and a hope for all of us. The answers will be found, and maybe in our lifetime!
I second Katie’s thoughts here. One can feel so alone fighting this battle day in and day out with physicians who are completely uneducated and really don’t want to educated in ME/CFS & FM. It’s uplifting to see this come together, especially with Cort’s expertise on who the big players are.
We experience enough disappointed and ignorance. It’s nice to celebrate recognition and the desire to help us.
And where exactly will this new COE be located? I wish that we’d have one near Atlanta for my sake but that’s a personal wish. Utah? marcie myers
I’m afraid Salt Lake City.
You do have Younger in Birmingham, though..all he needs is a darn doctor. I was told that one reason UAB hired him was because they recognized there was a huge unfulfilled need in that part of the South…
I could see a clinic in there – they got somewhat close once with Tina’s efforts.
Cort, what do you think about Dr. Lerner’s work? He is aggressively treating the various infections he finds in patients. Will Bateman and Vernon be doing this? Also, I know folks are tired of hearing this, but the totally negative tests by Lipkin make no sense. Bateman got all negatives for a retrovirus. None of this makes sense when even healthy controls were infected at a low rate. We must demand further study and ask Dr. Lo to do the studies.
I agree that Lipkin’s results at least for herpesviruses were strange — too strange to be credible.
I love what Lerner is doing. He’s pushed the envelope on antivirals for years. Peterson’s work with Vistide apparently prompted him to take it up..and he’s developing a protocol for that. I think he’s almost done.
I think Bateman does aggressively treat infections when she finds them. I don;t know if she looks as hard as Lerner or is convinced as quickly as Lerner that an infection is present. I really don’t known. She doesn’t have a reputation for concentrating on viruses. In that regard I would think of Dr. Peterson, Dr. Lipkin, Dr. Kaufman and Dr. Klimas first – but I really don’t know.
Cort,
Indirect comment to the above…
My mind works full time trying to figure out how to help our cause, help research. Has anybody thought about or tried to find a kid with severe CFS who could apply to Make A Wish Foundation and ask for donations to a CFS research program instead of a trip to Disneyland which would be impossible? I was scanning the Make A Wish website and found some stories of severely ill kids, but not fatally ill. I’ll do the legwork if anyone knows a family with a suffering kid willing to apply. What do you think?
Thanks!