Through her medical practice, clinics, research, and education,
Lucinda Bateman, MD, is on a crusade to drive awareness about the
often devastating illnesses chronic fatigue syndrome and fibromyalgia.
By Everyday Health Staff
As a young woman, Lucinda Bateman, MD, loved science, particularly
zoology, botany, and ecology. Her role models were her favorite high
school and college teachers and like her parents, who were also
teachers. Her plan was to get a secondary education degree, with the
option to pursue a masters or doctoral degree in a scientific field.
But after spending two years teaching in Southeast Asian refugee camps
and then getting a masters in botany, Bateman decided that she would
be most empowered to create positive change as a physician. That
decision led her to the Johns Hopkins School of Medicine, where she
was taught to think critically and creatively. She chose an internal
medicine residency because it gave her the most flexibility to decide
a future career in medicine.
By the time Bateman moved back to Utah in 1987 to begin her residency
in internal medicine, her older sister, a previously healthy young
mother of three, had become chronically ill. Doctors initially
investigated her symptoms, but when answers were not forthcoming, they
gave up and suggested that she was probably just depressed and should
"take a night class" to broaden her world. But Bateman knew there was
something more going on. To help her sister, she began scouring the
medical literature and attending conferences so she could understand
the emerging science of fibromyalgia and chronic fatigue syndrome.
Specializing in Chronic Fatigue Syndrome
"I started practicing general internal medicine in 1991, and because
of my interest in fibromyalgia and chronic fatigue syndrome, the
clinic quickly became a magnet for patients chronically debilitated by
fatigue and pain that no one else seemed to understand," Bateman says.
"Almost a decade later, in late 1999, when it seemed little progress
had been made in terms of research, medical education for physicians,
and general accessibility to health care for these patients, I made a
huge decision."
Bateman sent a letter to her 3,000 patients and told them she was
closing the practice to start a specialty clinic =97 the Fatigue
Consultation Clinic. The clinic was immediately busy, but it became
apparent that seeing patients one by one was a slow way to make
progress. In 2001, with a generous donation of $5,000 from the Marion
D. and Maxine Hanks Foundation, a mentor from her refugee camp
adventure, she recruited a board of directors and started a non-profit
organization -- Organization for Fatigue and Fibromyalgia Education
and Research (OFFER) -- devoted to raising awareness, advocating for
patients, educating medical providers, and supporting research related
to chronic fatigue and fibromyalgia. OFFER has since touched thousands
of lives around the world.
My accomplishments: In the last decade, the Fatigue Consultation
Clinic has become home to hundreds of patients receiving clinical care
and engaged in pivotal research. The clinic's research department and
patients have participated in more than 35 clinical trials to advance
our understanding of fibromyalgia and myalgic
encephalomyeltitis/chronic fatigue syndrome treatment, and biomarkers
of these diseases.
The rich experience provided to me by patients with these illnesses
has put me in a position to teach others. Through a combination of
continuing education, volunteer lectures, and paid pharmaceutical
talks I have delivered more than 500 face-to-face and group lectures
relating to chronic fatigue and fibromyalgia to other medical
providers.
Through collaboration with University of Utah scientists, the clinic
has provided clinical input and coordinated willing research
volunteers for several recent groundbreaking studies, including a
large study of 100 chronic fatigue syndrome patients with that found
no evidence of a new retrovirus; a study showing familial risk of
chronic fatigue syndrome extending to third degree relatives; two
scientific papers demonstrating novel biomarkers of fatigue and pain;
and a revision of the chronic fatigue syndrome case definition.
Our non-profit, OFFER, has provided more than 600 high quality chronic
fatigue symdrome and fibromyalgia continuing education hours for
medical providers, and thousands more to patients and their caregivers
who have attended cutting edge chronic fatigue syndrome and
fibromyalgia educational conferences as well. The OFFER Web site is a
rich source of original educational videos, and a networking resource
through monthly e-news and support boards. An all-volunteer
organization supported almost entirely by small donations, OFFER has
also directed almost $40,000 to directly support chronic fatigue
syndrome research.
In addition to serving as a volunteer board member and executive
director of OFFER, I have served on the boards of the International
Association of chronic fatigue syndrome and fibromyalgia/myalgic
encephalomyeltitis and the CFIDS Association of America, where others
like me come together to prompt change. I had the opportunity to be
part of the U.S. Department of Health and Human Services CFS Advisory
Committee for four years. The committee has advised the U.S. Secretary
of Health that these disorders need more federal recognition and
research funding, centers of excellence, disability reform, access to
medical care, and better provider education. The CFSAC initiated
efforts that culminated in an National Institutes of Health sponsored
CFS State of the Knowledge Conference in 2011.
Every accomplishment listed above has been the result of hard work by
many, including the patients who suffer from these disorders and yet
willingly volunteer to help others; my staff; many clinical and
research colleagues; and amazing volunteers.
My future health projects: Current projects revolve around finding
reliable diagnostic tests for myalgic encephalomyeltitis, chronic
fatigue syndrome, and fibromyalgia that will return these conditions
to mainstream medicine and science. It is within our grasp to
understand the causes of these conditions, to develop tests that
demonstrate the presence and severity of illness, and to develop
effective treatments. Of course, prevention is the ultimate goal.
My favorite healthy habit: Strength training. I=92ve always enjoyed
aerobic activity such as walking, hiking, or cross country skiing, but
in my forties I discovered that consistent strength training helped me
control my weight and maintain the fun of intermittent vigorous
activities such as skiing, practicing basketball with my son, or
shoveling a new snowfall. Maintaining muscular strength reduces
"weekend warrior" injuries and helps me have a higher energy level
overall.
My health hero: My great aunt Beulah who was born in Dingle, Idaho, in
1897. One of eight children raised on a homestead and ranch, she was a
schoolteacher before 1920, worked as a nurse to put her brothers and
herself through school, and finally became a physician in the1930s.
Auntie Bea, as I called her decades later, assured me that becoming a
doctor would open exciting doors to the future. Early in her medical
career she directed a women and children=92s hospital in the
Philippines. After she married and started a family, Beulah's tropical
dream was shattered by the escalation of World War II. Her husband, a
US Army officer, died in the Bataan death march, while she and her two
sons were interned in POW camps for three years. She was later awarded
the Medal of Honor by General MacArthur for saving the lives of
soldiers injured in the bombing of Baguio on Pearl Harbor Day in 1941.
After the war, Dr. Beulah partnered with a female psychiatrist and
opened a mind-body medicine clinic in Palo Alto to heal the wounds of
war. She was the only doctor I saw for health care until my own
medical training began.
My practice for what I preach: I try to get eight to nine hours of
sleep every night, balance work with family and personal time, and
stay physically fit. I could do a better job of practicing what I
preach about diet. I love tasty food!
My best health tip: Be the tortoise not the hare! Slow and steady wins
the race. Developing steady habits is much more valuable than pursuing
crazy tangents, such as fad diets, drug treatments, or exercise
extremes. The two most important turtle-like habits for maintaining
quality of life with aging are maintaining a normal body weight,
staying as physically strong and active as possible, in spite of
impediments that arise.
My three top musts for fibromyalgia and chronic fatigue syndrome management=
:
Learn everything you can about the condition from trusted sources, and
don=92t be overly concerned about what well-intended but uninformed
people think or say.
Be as healthy as possible in other aspects of your life, such as
maintaining a positive attitude, eating right, and avoiding unhealthy
habits.
Learn to pace activity to minimize symptom flares, yet balance this
with the need to keep moving forward with life. The turtle is our
mascot.
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