The Bateman Horne Center was created out of the desire to help more people.
Dr. Bateman’s private practice was swamped. Her waiting list was a mile long – and she’d had it! With visions of all the patients she couldn’t help dancing in her head, Dr. Lucinda Bateman threw her hat over the wall, closed her practice, and embarked on a bold experiment. In order to help more people, she would build a not-for-profit institution that combined clinical care, research, and education under one roof for people with chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM).
Rob Ence was the man charged with turning Dr. Lucinda Bateman’s vision into reality
The problem was that she wanted to treat everyone possible, and not be dependent on fees from the more well-off to survive. The Bateman Horne Center (BHC) that resulted is an anomaly in the ME/CFS/FM ecosystem. It takes insurance and provides services for some who can’t fully pay for them, and it does so without stinting on treatment for two of the most time and energy-intensive conditions around.
In order to survive, the Center needed to bring in money from a diverse array of sources including clinical fees (insurance, patient fees), research studies and grants, donations, and fundraising.
A couple of years ago, I’d talked with the Center’s Research Czarista Suzanne Vernon and Executive Director Rob Ence. Ence was the man Dr. Bateman had tasked to make the impossible happen. An engaging presence, I could see why Dr. Bateman had chosen him to try to bring her baby to term.
A couple of years and one pandemic later, I was eager to follow up with Rob. He’s served and managed boards of directors for non-profit organizations for decades but BHC was a different deal. Five years into the experiment I wanted to know how the BHC was doing. Were the projected revenue streams holding up? Had they been able to find doctors willing to work for less? Had the Center made it through the coronavirus pandemic OK? What were his thoughts on the current medical system?
Ence was the same engaging character I had reviewed earlier. Find out what he said about this unique institution in a Zoom interview.
The Zoom Interview
More From the Bateman Horne Center
ME/CFS & FM from Diagnosis to Management – the Video Series
A series of videos featuring Dr. Bateman on diagnosis, pain, sleep, orthostatic intolerance, etc. Check them out here.
Clinician Coalition
The Clinician Coalition is led by Mary Dimmock and Dr. Lucinda Bateman.
NASA Lean Test
A validated way to assess orthostatic intolerance in your doctor’s office.
Thanks Cort. I’m so glad you took the time to talk with Rob. He is a great asset to our organization. We wouldn’t be here without him.
Cindy Bateman MD
He’s an impressive guy 🙂
I did clinical research at Cleveland Clinic and published the first case of vitamin B1(Thiamine) dependency in 1969. It led to a lasting interest in the use of megadose thiamine. CFS and Fibromyalgia both responded to thiamine and I studied the variety of thiamine derivatives that were developed as a result of discovering allithiamine in garlic. My research, case histories and animal experiments are all recorded in a book, Lonsdale D, Marrs C. Thiamine deficiency disease, dysautonomia and high calorie malnutrition. 2017; Academic Publishers, an Imprint of Elsevier, London. A number of reviews are available at Amazon books.
I was ignored by the Bateman office and when trying to get an appointment, I was told “These people are really sick and need help” (like I’m not???) It was so insulting and infuriating.
Sorry to hear you couldn’t get in Lorraine. I imagine that was devastating. I think your experience may demonstrate the need that remains. Even with I think three doctors they have compared to the one before the BHC probably still can’t meet the need out there – hence the goal of freeing Cindy Bateman so that she can educate, educate, educate other doctors.
I would hope that the BHC and the Clinician’s Coalition get fully used as a resource for the doctors seeking not only to treat ME/CFS but long COVID as well. And I hope you can find someone to help you.
Thanks, Cort. It’s going on 10 years and I am still looking for someone who can at least help with the symptoms.
I must second Lorraine’s email. Prior to the “great change” I was able to do consults with Dr. Bateman via FaceTime. When she made the change all that went by the wayside. Somehow the idea of “helping everyone possible” became less real to me.
Sorry to hear that Gregory. I wonder if that’s the result of Dr. Bateman personally having more to do? Whatever the reason it’s clear is that she and the BHC are seeing more patients and touching more lives than ever. I;m sorry that the personal touch has been lost for you, though.
Do you have any articles that address some of the specific treatments they’re using that are actually helping their patients?
It’s great indeed that a clinic like this is tackling the vast issues of ME but they naturally can’t treat everyone and, based on the comments here, they aren’t taking new patients.
It’s also wonderful that they’re refocusing their efforts to train other doctors, almost all of whom are clueless. We certainly need this! But are they offering specific insights, with details, into promising treatments or protocols that we can either try ourselves or take to our doctors? I have a very opened-minded doctor who listens when I bring him outside info and incorporates it when he can.
Disseminating information could be another great tool for them to help spread their knowledge to the patient and medical communities.
Thanks Cort!
The BHC has some great overviews of key treatment areas – https://batemanhornecenter.org/education/videos/
Cort, thank you so very much for all you do for ME/CFS and FM patients. Like so many others, I went overnight from living an active life to being mostly bedridden for years. Now, 33 years later, there has been some slow, slow slight improvement, but the battle goes on . . . In addition to solid information, the validation you contribute is tremendously important. Thank you for what you do.
This interview with Rob Ence gave me a new shot of hope that there may be help out there—that there are knowledgeable medical people aware that this horrible, disabling illness is actually real, and they are doing what they can to help. It is like finding a spring of fresh water in the desert—-so desperately needed!
The Bateman Horne Center has taken on a monumental task. I applaud them for it. I was impressed with Rob Ence’s clear sense of mission, and his professional and realistic approach. Everything I see and hear says this is a dedicated professional team committed to making a difference, rather than lining their own pockets. They are pioneering in a real sense, and inevitably, there will be changes in how they operate. And they are people, so that human factor of imperfection is unavoidable.
Just learning that they are there, focused on helping a neglected population in the best way they can, is a wonderful thing, even if I never personally benefit from it. I say Hooray! for them. May they lead the way to many more!
So well said Linda! Here’s to more than slight improvement in the future.
Will there be a transcript of this available in the future? I just can’t concentrate enough to listen and retain information. I like to be able to print things. Thank you.
We will see if we can find ways to get an automatic transcript created. Otherwise, I’m afraid it’s just too much work. It takes a lot of work to manually create a transcript.
I think it’s great to get to see people, like Rob Ence, who are working away behind the scenes, in organisations like the Bateman Horne Center.
Even though I live in rural Ireland, I have accessed lots of free online resources, provided by the center. Their website is packed with information and I’ve participated in their online support groups, via Zoom. I would recommend anyone who isn’t aware of what they offer, to take a look.
Listening to Rob Ence, it just makes sense to me that people with ME/CFS need more time with a doctor, to try to figure out all their symptoms. Their links to the medical education of future doctors and nurses is practical and crucial and being involved with research is so important, to advance the understanding of the condition.
The Bateman Horne Center seems to me, to have it’s heart in the right place and is doing everything it possibly can, to help people with ME/CFS.
I so agree. Dr. Bateman has always done everything she could to help patients and her fellow physicians with practical advice.
I still remember her “Doc Talk” webinar from about a decade ago for the then CFIDS of America (now Solve M.E.). Really important practical stuff on how to make the most of too-limited time in doctor appointments. This kind of strategy is necessary in a near impossible situation with a very complex, insufficiently researched disease, a very ill patient with a million symptoms and a physician, likely with very little disease knowledge and likely zero training in it.
Her website is chockablock full of the latest information. Her Clinician Coalition with Mary Dimmock is phenomenal – check out the clinician list. They’re trying to fill a massive gap created by medical schools (worldwide) with no interest in the disease and therefore no place in the curriculum.
And this:
“…there are less than two dozen ME/CFS expert clinicians in the entire country and the majority of them are nearing retirement age.“
This ought to strike fear into the heart of every ME patient.
All that said, I completely empathize with the patients who have commented here on their deep loss from being prevented from seeing her one-on-one.
Isn’t this the truth…
“…there are less than two dozen ME/CFS expert clinicians in the entire country and the majority of them are nearing retirement age.“
This ought to strike fear into the heart of every ME patient.
@Cort,
is there a spot or blog within HealthRising to post links to items that might be of interest to afew people, where it wouldn’t bulk up comments section for people who may not be interested in more than current blog(s) topics?
could you post a link yo the spot, if there is one please?
(for example:
https://www.nature.com/articles/s41380-021-01148-4
Perspective
Open Access
Published: 17 June 2021
Chronic post-COVID-19 syndrome and chronic fatigue syndrome: Is there a role for extracorporeal apheresis?
Stefan R. Bornstein, Karin Voit-Bak, […]Richard Straube
Molecular Psychiatry (2021)Cite this article
–about a ten person trial where 7 saw benefit)
Not really but feel free if something pops up that really grabs you – feel free to post it :)?
thank you 🙂