Dr. Lucinda Bateman, MD, is founder of the Salt Lake City-based Fatigue Consultation Clinic, and advocates ME/CFS and FM education and awareness as executive director of the non-profit OFFER (The Organization for Fatigue and Fibromyalgia Education and Research). A recent board member of the CFIDS Association of America and the International Association for CFS/ME (IACFS/ME), and currently a member of the Federal CFS Advisory Committee (CFSAC), Dr. Bateman shines as a conduit between the research and clinical spheres, bringing scientific data to the forefront.
Even as a medical student, Lucinda Bateman seemed destined to pour her heart and soul into ME/CFS. As she was completing her degree at Johns Hopkins Medical School in the mid-1980’s, her sister was struck with an incapacitating illness that eluded the medical community. “Her doctors had pretty much thrown up their hands and weren’t being very helpful,” recalls Dr. Bateman. “As I tried to figure out what was going on with her health, it led me to gradually read more about an emerging diagnosis called Chronic Fatigue Syndrome. I was a new doctor and I wanted to help, so I started reading all the early articles and learning.”
Armed with her newfound knowledge, Dr. Bateman started noticing something else remarkably striking that would forever impact her life and career. She observed that many of the patients she saw during her residency at the University of Utah mimicked her sister’s illness. Her interest was piqued, and so began her life-long journey unmasking the mysteries of ME/CFS. “I guess I just started right from the beginning with an interest in the illness,” she says.
Even though Dr. Bateman established herself as a general internist, doctors and patients alike began seeking her out for ME/CFS treatment and information. “People in my community started identifying me as an expert in this illness simply because I had an interest. I was just trying to take care of what I saw as a very important need in my patient community, so I didn’t see it as being any kind of expert,” she says.
“I decided that if I really wanted to be an expert, I better educate myself to the level of an expert, and there really isn’t any way to do that other than doing research or joining in,” says Dr. Bateman. “But I just felt like my practice was so full and so busy as a general internist, that I couldn’t devote the time to this illness unless I did it full-time.” Finding herself at a critical crossroad, she opened the doors to her ME/CFS and FM specialty practice, the Fatigue Consultation Clinic, in 2000.
“I saw opening the Fatigue Consultation Clinic as a training ground for me. As a way for me to really learn about these illnesses firsthand by seeing lots and lots of patients, gathering information from them, and trying the things that I knew systematically,” Dr. Bateman says. But she never kidded herself about the huge undertaking she was embarking on, and continued to ask herself one very important question: how could she make the greatest impact on this illness in her lifetime?
Her answer was two-fold: primary care and awareness.
“There are so many patients; it’s not like I could possibly take care of everyone. My idea was to become better at it, to really learn about it from seeing patients, and then also to have a strong commitment to raising awareness about the illnesses among patients, but also in the medical community,” she explains.
“Mostly what struck me about [my sister’s case] is what strikes every patient, and that is that when people ran out of ideas, they sort of abandoned her. That is just not the way I want to practice medicine, so that’s why I like to stay in the trenches with primary care, delivering good healthcare and being a resource for patients who really need some help,” says Dr. Bateman.
“Good healthcare” to Dr. Bateman means “time” and “listening.” Having seen more than 1,100 ME/CFS patients, with whom she spends 2 to 4 hours on each initial consultation, Dr. Bateman has gained a reputation for her comprehensive, methodical work-ups. “There’s a message we learned (at Johns Hopkins) that the patient can tell you most of what you need to know if you’ll just listen, so I listened to my patients,” she explains. “The only thing I think we do differently here is we try to find a way to take more time with the patient.”
According to Dr. Bateman, unity is the kingpin in making progress with ME/CFS. “I think that we should be inclusive, and not exclusive. We should not fight among ourselves. All the people engaged in this work should be careful not to vent our frustrations on each other, but rather join together in moving forward in a very positive way,” she says. This idea of being “inclusive” applies readily to the controversy surrounding the name of this illness itself.
“I agree with everyone that the term Chronic Fatigue Syndrome has not been a very good name, and it’s definitely associated with misunderstandings and judgments, but I believe most of that is not from the name itself, but from lack of information on the illness itself,” she says. For this reason she remains steadfast in her quest to bring scientific data to the forefront through her clinical work, commitment to educational conferences, and the nonprofit organization OFFER.
Still, the name is a problem, and she recommends the use of ME/CFS as a transitional name until a better understanding of this illness comes to light. “I’m all for a better name, and I was a strong advocate for ME/CFS.” She believes including “ME” helps improve our awareness of this illness as an international problem while implicating its serious nature. Also, by keeping “CFS” in the name for now, ground gained under the old name (Chronic Fatigue Syndrome) won’t be lost.
“I think if we argue and argue and argue over these nuances, we’re wasting important energy. I think that the conversation and the process is the most important thing, and that whatever we decide is likely to evolve and change… I think we need to keep our sights on the future, and on progress rather than getting bogged down arguing about details,” says Dr. Bateman.
“We should kind of agree to disagree, and then shift our energies exactly where we need them, which is more funding, more science, more critical delivery of healthcare, more cohesiveness, and more inclusiveness while we try to move forward.”
“I think the campaign to change the name is also an awareness campaign. It has many roles… it’s not just about the name itself, it’s about the whole illness and understanding the illness, and taking it more seriously. So, I see the Fair Name Campaign as having a much larger role, and that’s a good role,” she says. It is in this light that Dr. Bateman encourages open-mindedness and involvement on many different levels.
“There are many ways to achieve progress, not one way. I think we should engage in all of them, and that diversity of approach to solving the problem is also very helpful because we don’t know what approach will lead to success,” she explains. “We should encourage a broad variety of approaches, and encourage more people to be creative because it’s good to use many vehicles… whatever anyone has skills in, they should try to work in that area to provide good information and move the cause forward.”
For Dr. Bateman, that has always meant learning as much as possible about ME/CFS and sharing those discoveries with the world. “Early on, I think I realized that it was a bit unrealistic to think that I could be the person who has the breakthrough of what causes this (illness), or of what some magic bullet treatment is,” she says. “I thought, one thing that I am empowered to do, that I have resources to do, is to learn about this illness and pass this learning on to others to create a critical mass of providers and scientists.”