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Patients of doctor who died ask: What now?

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It was standing-room-only Thursday night, and most of those standing were tired and in pain.

But the more than 100 people who gathered at the Moreau Medical Center were desperate to find out what they can do now that their doctor is dead.

The patients, who suffer from fibromyalgia and chronic fatigue syndrome, were patients of Dr. Deborah Robinson, who drowned on Sept. 17 at Fish Lake while scuba diving. Concerned that there is a shortage of doctors who know how or are willing to treat people suffering from the syndromes, the patients wondered where to turn now.

"What was a crisis is now an emergency," said Judy Grant, a volunteer with OFFER (Organization for Fatigue and Fibromyalgia Education and Research), about the lack of doctors. The waiting list to see Dr. Lucinda Bateman, one of the few area physicians who treat the illnesses, is 30 pages long, 14 names to a page.

"Even if I saw one of you a day," Bateman told the crowd, "it would take me all year."

Many of the people who attended Thursday's meeting were long-time patients of Robinson's. Others, like Anita Bates, had finally found Robinson after years of searching for a doctor who understands fibromyalgia, a complex, chronic condition that causes pain, fatigue and other symptoms. Bates had seen Robinson once and had just sat down to make a follow-up appointment when she opened the newspaper last week and read about her new doctor's death at age 53.

"I'm totally devastated," Bates said.

The shock of Robinson's death, plus the grief and confusion that followed, caused many patients' symptoms to worsen, psychologist Stuart Drescher told the group. Drescher himself has suffered from chronic fatigue syndrome for 14 years and was a patient of Robinson's.

Although there is no known cause for the related conditions of fibromyalgia and chronic fatigue syndrome, it is believed that stress is a factor, according to Bateman, whose 700 current patients each have one or both of the illnesses.

Many of the patients on hand Thursday were concerned about how to get prescriptions filled and how to find a new doctor who not only understands their illnesses but is covered by insurance. OFFER handed out a short physician referral list, but "quite a few doctors on the list aren't taking new patients," according to a patient in the audience.

To add to their woes, a popular pain medication — Vioxx — was pulled from the shelves by the drugmaker Merck because of clinical trials showing an association with heart attacks and strokes.

Bateman offered several "survival" tips to Robinson's patients, including this one: "Immediately call your health plan and insist they find a physician for you. . . . Ring their phone off the hook." There is no established medical speciality for these syndromes. Family practice doctors are the most open-minded in dealing with the illnesses, she said; internists "are the most difficult."

The health-care system "discriminates against patients with these illnesses, very definitely," Bateman said. Insurance companies tend to "marginalize" the illnesses. "There's not much motivation for them to define an illness that's so time-consuming." Bateman, Robinson and others founded OFFER "to teach physicians about this illness" and to encourage more doctors to treat it.

E-mail: jarvik@desnews.com