Patients of Dr. Deborah Robinson, who died in a scuba accident last week, find their grief compounded by the reality that they need to find another doctor in a field of medicine that is already chronically underserved.
Robinson, an internal medicine expert, treated hundreds of patients who have either chronic fatigue or fibromyalgia. She was one of a small number of Utah doctors who deal with the two conditions, which are the subject of some controversy.
Although the illnesses are recognized by the National Institutes of Health, the Centers for Disease Control and Prevention and professional groups like the American College of Rheumatology, not all physicians believe they are actual medical conditions. And of those who do, only a small percentage feel comfortable treating those patients, said Dr. Lucinda Bateman, who also practices internal medicine and treats patients with chronic fatigue.
She has 100 people on a waiting list for treatment of chronic fatigue herself and estimates that at least several hundred of Robinson's patients will have challenges finding care.
"It's a crisis trying to find good, knowledgeable doctors on chronic fatigue and fibromyalgia," said Judy Grant, who has chronic fatigue and is a member of OFFER, the nonprofit Organization for Fatigue and Fibromyalgia Education and Research, a group Bateman and Robinson helped found and lead.
This week, OFFER is scrambling to identify doctors who agree to treat patients who may be adrift by Robinson's death. It will host a meeting Thursday for Robinson's patients who need information about how to get established with a new doctor, whom to see, how to get refills on medications in the interim and other issues.
The gathering will be at 6 p.m. in the Moreau Building auditorium, 1002 E. South Temple, and will be lead by board members Bateman, Dr. Landon Beales and psychologist Stuart Drescher.
Although all three providers deal with the two illnesses, they have busy practices of their own and believe Robinson's patients may have a hard time finding medical care.
"Finding a new doctor will be particularly challenging for her many patients with fibromyalgia and CFS, since there still are relatively few physicians who feel comfortable treating such poorly understood conditions," Bateman said.
One problem is that there is no designated specialty that treats CFS and fibromyalgia, although the American College of Rheumatology actually defined fibromyalgia.
Recently, Intermountain Health Care and OFFER held an educational conference on the conditions, bringing in national experts. A couple dozen physicians attended, and Bateman hopes some of them will help fill in the gaps in patient care. She estimates it will take at least 20 to fold Robinson's patients in with their own established patients.
Helping her patients is a way to honor Robinson's memory, as well.
"She always went to bat for underserved patients," Bateman said.
Physicians who want to be on the referral list or patients who would like more information on the meeting (everyone's welcome and no reservation is needed) can call OFFER at 801-328-8080.
E-mail: lois@desnews.com