Fighting a Forbidden Foe

Most everyone had long since gone home, but a small group still pressed around him, asking questions, desperate for answers. When I. Jon Russell ’65, M.D., Ph.D., American College of Rheumatology (ACR) Master, visited Union College in April 2011, nearly 600 Lincoln residents gathered to hear him talk about advances in treatment for fibromyalgia, a disorder often marginalized by the medical community.

Late into the night he continued to field questions, trying to bring hope to many who have suffered without answers. This scene has been repeated many times over the years, as Russell has traveled the world, drawing on his more than 30 years of research and teaching experience in an effort to support the sufferers who, when he began, had virtually no champion in the world of medicine. He finds that even today, many people, especially outside medicine, believe the disorder simply to be widespread pain or a catchall when doctors can’t make a diagnosis.

Russell first became interested in the topic after examining fibromyalgia patients during his rheumatology fellowship in the mid 1970s at the Mayo Clinic in Rochester, Minn. “I was convinced they were telling us the truth about their symptoms, but many of my colleagues did not consider the patients’ condition to be real,” Russell said. “I’m naturally a supporter of the underdog, so I felt a responsibility to try to help.”

He spent the next 32 years researching the disorder while on faculty at the University of Texas Health Science Center in San Antonio. Even when faced with censure from his division chairman because the chairman didn’t consider fibromyalgia to be an appropriate topic for research, Russell persisted and outlasted his detractor. When the university eventually chose to transition from a research model to a clinical model, Russell was already 67 years old. He decided to retire and start a research clinic in the San Antonio community where he could continue his work.

Russell founded the Journal of Musculoskeletal Pain 18 years ago, and still serves as its editor-in-chief. A senior editor at Taylor and Francis Press in London, he has also published over one hundred research articles on fibromyalgia and related topics. Having led or participated in many groundbreaking research projects over the years, Russell is probably best known for a series of studies showing biochemical abnormalities in the spinal fluid of fibromyalgia sufferers. More recently, “we’ve discovered two genes and a dysfunctional G protein-coupled receptor associated with fibromyalgia,” he said.

While still at University of Texas, pharmaceutical companies began taking notice of Russell’s work as they saw a possible market for treatment of fibromyalgia. “Our research reports had identified therapeutic targets for the development of medications for the treatment of fibromyalgia patients, so the companies asked me to consult,” he explained. Russell has consulted with six different companies on a host of medications, three of which are now approved by the U.S. Food and Drug Administration (FDA) for this indication and are commonly used to treat fibromyalgia.

What is fibromyalgia?

“A common misconception is that fibromyalgia is just about pain,” Russell said. “It is a painful condition, but people with fibromyalgia are very troubled by cognitive dysfunction. They don’t feel like they can remember things. If a clinician performs a cognitive assessment of a person with fibromyalgia, the results are consistent with someone much older. That would suggest that fibromyalgia is a condition of premature aging.” Sufferers also experience fatigue, chronic headaches, chest and neck pain, irritable bowel and bladder and often, such severe sleep dysfunction that they are not able to replenish vital energy.

Russell’s own research has shown that symptoms stem from something more than imagination. “We have many pieces of information— including spinal fluid studies and images of the brain showing altered central nervous system function in fibromyalgia— all of which support the concept that fibromyalgia is a real medical disorder,” he explained.

The research findings have been critical to establishing the nature of the fibromyalgia syndrome, but he contends that the clinical signs and symptoms of fibromyalgia are so consistent that it is really unnecessary to document biochemical changes in the spinal fluid or to conduct medical imaging for every fibromyalgia patient who comes to the physician for medical care.

How widespread is it?

In a city the size of Lincoln, Russell believes that as many as 5,000-6,000 people suffer from fibromyalgia. “Based on a study conducted in Wichita, Kan., 10 percent of the general population has chronic widespread pain,” he explained. “Twenty percent of this number [about two percent of the general population] suffers from fibromyalgia—a subset of those with chronic widespread pain.”

Fibromyalgia is most likely to strike women during or after their childbearing years and then does not resolve. “Nearly 10 percent of women in their fifties and sixties suffer from fibromyalgia,” Russell said. “And more than seven in ten cases are female.”

Is there treatment?

Although fibromyalgia is treatable, it is not yet curable. Russell has seen promising results from a variety of treatments. Using a combination of medications and lifestyle changes, “we have seen patients who are dramatically improved,” he said. Russell believes physicians are now under pressure to take fibromyalgia more seriously. “But they have many disorders to care for,” he explained. “Their training and continuing education may not have prepared them for treating fibromyalgia.” But because there are now medications approved by the FDA for treatment of fibromyalgia, “pharmaceutical companies are helping with the effort to educate physicians about fibromyalgia and about how to use the new medications most effectively.”

It started back at Union

Russell arrived at Union College with an interest in researching medical disease. He enrolled in the pre-med program with a major in chemistry. He then earned a master’s and a doctoral degree in biochemistry and nutrition from the University of Nebraska-Lincoln before graduating from Loma Linda University School of Medicine. He completed a residency in internal medicine and a fellowship in rheumatology at the Mayo Clinic in Rochester, Minn., before joining the rheumatology faculty of the University of Texas Health Science Center at San Antonio.

Russell feels his courses and teachers at Union gave him a strong foundation for graduate education. “I didn’t have to struggle in the graduate school program because I was well prepared at Union,” he said. “I think the same was true for the science courses in medical school.”

His first year at Union proved very different, however. “I had not studied chemistry in high school. Many of my classmates in Union’s General Chemistry course came to college having had high school chemistry. They started the course with a much better grasp of chemistry terminology and concepts than I did,” he said. “I was so grateful to teachers like Dr. Warren Murdoch ’52, Dr. René Evard and Dr. Earl Leonhardt ’50 who helped me through that first year and helped me to enjoy classes like organic and physical chemistry.”

“Dr. Murdoch was probably my favorite teacher,” Russell remembered.” He was very tall with curly black hair, a big unruly mustache, and a quizzical smile—he looked like the stereotypical absent-minded professor. He would draw out on the blackboard a sequence of organic chemistry synthesis steps and then say, “‘Isn’t this fun?’ He really went out of his way to help students who wanted to learn.’”

But life at Union wasn’t all science. “I probably spent 90 percent of my time on science and math,” he said. “But the social activities are what I remember most. I met my wife, Barbara Runnels Russell ’63, M.Ed., at Union and we married during the summer before my senior year.”

Russell also traces a love of art back to an elective art history course at Union. “I ate it up,” he said. “I have since become an amateur artist.” Russell’s paintings hang on the walls of his practice and he is preparing a series of coffee table books to display the more than 1,000 pencil portraits he’s drawn of people he has met all over the world. His love of art also seeped into his scientific world when he began using portraits by famous painters on the covers of his medical journal. For each issue, he writes a brief biography of the featured artist, of the artist’s model, and of the artist’s contemporary supporters. “For me, this is Art History-202,” he said.

Family and future

Russell and his wife have been married for 48 years and have three children. Their oldest son followed in his father’s footsteps, earning a Ph.D. and M.D., and is now on the faculty at Harvard School of Medicine, leading a program to develop an artificial pancreas for the treatment of diabetes. Their second son is a computer engineer and musician, and their daughter is a personal trainer with a physical education degree. “Our children are all married. We love each of their spouses and our three little grandsons.”

Now nearly 70 years old, Russell continues to see patients, test new fibromyalgia drugs, write teaching materials for patients and physicians, and lecture around the globe. “Right now, one of my projects is helping juveniles with fibromyalgia to find effective treatment,” he said. “I still have energy and can still tie my shoelaces. I think the good Lord is keeping me healthy, so I should repay.”

Russell feels grateful for his time at Union. “When I was at Union, the education was very good. Our facilities were adequate for the time, but the building really looks dated now,” he explained. “A new science complex is needed for Union to continue to grow in the science arena. This new physical plant for science and mathematics will serve the immediate needs and will provide room for expansion."