We are excited to present Dr. Lucinda (Cindy) Bateman as part of our “People in ME/CFS Research” spotlight series. Cindy is the Founder and Medical Director of the Bateman Horne Center (BHC), which is also the clinical core for the JAX ME/CFS CRC. At BHC, she cares for patients suffering from ME/CFS and Fibromyalgia, educates physicians and patients about these diseases, and develops clinical research projects with Dr. Suzanne Vernon. I recently called Cindy to ask about her journey through the ME/CFS field, and how BHC got it’s start – read on for the full interview!

Hi Cindy, thanks for meeting with me! You have been involved in the ME/CFS field for a long time. Can you tell me about your background and your personal connection to the disease?

Yes, I can! I’m from Utah, but went to medical school at Johns Hopkins School of Medicine in Baltimore. So I had great medical training, and then I came back to Salt Lake City to do my residency. And when I got back, my older sister was sick with ME/CFS. So that was in 1987, and I was very naïve about this whole field and I just assumed there would be science and I could learn about it. And it was about the same time that the first papers were coming out on ME/CFS and Fibromyalgia, and so I could find stuff in the literature, but what I encountered in my residency were all of the negative stereotypes and biases, and so very early on I had both a personal experience and a medical experience. I started going to some of the early scientific conferences for ME/CFS in the 1990’s, getting to know the people in the country who were in the field. The attitudes I encountered, especially with Rheumatology and Infectious Disease, were in such stark contrast to what I was doing in my training in Internal Medicine. So I was fresh from an institution where they really taught us to think outside the box, so I could think my own thoughts and make my own decisions. We actually had a class at Johns Hopkins in innovative thinking to learn how to get out of the old paradigms and advance change. So from the very beginning of my career as a doctor, I had encountered this illness. And then my career really paralleled the development and awareness of these illnesses over these past 25 years.

When I started my Internal Medicine practice after I finished residency, as a joke, the fellows in Infectious Disease at the University Hospital put a message on the after-hours answering machine – and this is a regional hospital for all the surrounding states in the Midwest – they put a message on the answering machine saying, “if you’re calling about ME/CFS, call Dr. Lucinda Bateman,” and gave my office number. So when I opened the doors of my practice, I had a huge influx of patients with this illness. I practiced Internal Medicine for about 10 years, with a group of 3 other really great women who were also physicians, and a growing number of patients who have ME/CFS, autoimmune disorders, and widespread pain, and all the things that go along with this illness. So in 2000, it was getting overwhelming to maintain a regular primary care practice and also be seen as the guru of this, so I decided that I needed to close my practice. So I sent a letter to all 3,000 of my patients, and I opened my doors again as a solo physician. I called my new practice the Fatigue Consultation Clinic, and 100% of my time from then on was focused on just bringing in patients with unexplained chronic fatigue and widespread pain. So I have a very unique practice, because it spans all the people who don’t fit into another specialty, and mostly it’s people who fit under the case definitions of ME/CFS and Fibromyalgia. At the same time, I started a small nonprofit organization called OFFER, which stands for the Organization For Fatigue and Fibromyalgia Education and Research, and we had an all-volunteer Board, and we tried to do what we couldn’t do within the confines of the clinic. More education, with physicians and ME/CFS programs, and with patient conferences. We had like 300-400 people come to our conferences, and bring in people from around the country, including some of the people who are trying to do research and understand the illness better.

And then a few years ago, starting in 2014, our Board of the nonprofit decided that what our organization really needed to do was fill the void and the gaps that are present here. We rebranded the nonprofit as the Bateman Horne Center, and I gave up my solo private practice and now am only employed at BHC. So we can have a lot more flexibility and bring in additional money through grants and donations, because you can’t really run a clinic that’s based on just seeing patients with these illnesses. It’s very time-intensive and we don’t have any billable procedures, so the clinic runs in the red. I should mention that over the course of time, I became more interested in engaging in research, and so my financial model and the way I kept my clinic open before we did BHC, was to engage in research, which brings in more money than seeing patients. We kept our research very focused on the illnesses I saw in the clinic, and so I really learned how to do clinical research, and my research staff grew so that when we were ready to make the jump to BHC, we really had a pretty good start of an experienced clinical research staff, and we have been trying to grow the educational resources now that we are a larger nonprofit. And we now have 15 employees at the nonprofit.

 That’s quite a journey that has led to the creation of Bateman Horne Center! What is the overarching mission of BHC, and what is your approach to helping patients?

We really are kind of threefold. The first aim is we want to be a clinic and see patients and care for them, and do what we can as a medical clinic. And second, we want to do everything we can to facilitate research. It’s a perfect blend because I have this very large clinic of mostly local and regional patients that I have followed for many years, so we can usually enroll very quickly and easily in research. And these are very motivated patients who love to join and be part of the research. And the third aim is really working on educational aspects of BHC, so that we can have a broader reach and provide more than just seeing patients in clinic. There are so few providers in this field, that we have at times had hundreds of people who call and we can’t get them into the clinic because we can only see them one at a time and we have our limitations.

So our mission statement is, “empowering patients, advancing research, and improving clinical care.” So it kind of crosses over the clinic, the education, and the research. We can empower patients to participate in research, they can come to our classes and be better self-managers, and they can come to the clinic and be seen and treated. One of the things that is unique about BHC, is that we are intensely working on strategies to bring more physicians into this field, to provide medical education and lectures, and take the science to the doctors so they can recognize this disease and make a diagnosis.

In terms of education, where can physicians, patients, and advocates find out more information about ME/CFS and really get educated about the disease?

There’s a lot out there, and I think the federal resources are growing. There are many agencies that are building good information pages – the NIH, the CDC, and others. I do think we have a long way to go to get the major medical references, like references doctors turn to in the course of practice, like online references and big standards. Those places have still not embraced the new science. So there’s an effort to make change at that level, but that’s a hard level to make change happen at. But we’re hoping as a nonprofit to build a good library for patients and physicians where they can come and have a rich source of links and other information. I also think what you guys are doing at JAX is important too – to have the blog and educational efforts. Right now there isn’t really a place for physicians to go to get information, and that’s really a very important challenge to address in the future.

So BHC is the clinical core for the ME/CFS project that’s going on with the JAX Collaborative Research Center. How did you begin collaborating with Derya and get involved with JAX?

So I got to know Derya through Suzanne Vernon. And you already have Suzanne’s story of how she met him! When we did the first major collaboration with Derya, the patients came from my clinic. So Suzanne took the lead on reaching out and partnering with him, and we were able to draw from our research base for the grant, so Derya had a chance to have a look at our patient population and some of the findings, and he had confidence that we could recruit patients. So it really was Suzanne who was on fire about working with Derya, because she was so excited about his work, the quality of his work, and about the potential to bring someone like him and all of his colleagues into this field. I feel the same way, but it was really through Suzanne that I got to know Derya.

Switching to some advocacy stuff, as a clinician, what are some of the challenges you have observed in this field, and what would be the greatest contributions that could help you and the patients?

So the biggest barrier in the field has been a knowledge gap in the medicine. The science has moved slowly, mostly because it’s underfunded. But it is picking up speed. But still, the majority of physicians don’t know what this disease is and wouldn’t recognize it if they saw it. They would have no idea how to approach management of it, and I think that is the biggest stumbling block in the field. It’s also why we are very committed to every opportunity for bringing the science to good clinicians. And most importantly, to make that happen quickly, is data – research breakthroughs. The more we can support the underpinnings of this disease with science, even if we don’t have a diagnostic test yet, just science – that helps us understand the pathophysiology and the nature of the illness, that will open the doors very quickly for the rest of medicine to embrace this illness and join us and advance the field. One of the reasons I’m so excited about working with Derya is I feel like our collaboration so far and in the future will be very substantial in terms of scientific results that we can take back to get this illness mainstreamed into regular science. It shouldn’t be marginalized and left out in the cold. 

What does it take to be a good advocate for patients with ME/CFS?

There are many roles for advocates. I think all advocacy requires is courage and good facts. Because if you are an advocate, it means by definition that you’re fighting for something that somebody else doesn’t believe. You’re trying to convince a system or a group to move away from the beliefs they hold, and change their mind and believe you. So I’ve just taken the position that I’m going to do my work well, and I’m going to share it widely, and not be afraid.

For many years, being engaged in this field was detrimental to your career in academics or research. I think that has changed and is changing, and that’s good. But I do think that whether it’s friends or parents as advocates, or someone speaking up for themselves, you have to have courage. And the more you have the strength of good facts, the science, or anything that can add strength to your argument, then it becomes more difficult for people to turn away. And you have to have persistence. So you have to be courageous, you have to have the facts, and you have to be really persistent! 

That is so true! Do you have anything else you want to add?

I just want to say that I absolutely love my work. The thing that has kept me in it are the patients, the relationships I have with them and observing their courage. Their willingness to do everything possible for themselves and for furthering knowledge of the illness – it’s just been inspiring and I wouldn’t trade it for anything.