Goal of new registry: Finding answers to painful questions

Updated 10:00 AM September 13, 2004

Goal of new registry: Finding answers to painful questions

By Kara Gavin
UMHS Public Relations

For millions of Americans, every day brings a new struggle against overwhelming pain and fatigue—and neither they nor their doctors know why.

The mysterious ailments that affect them have names like fibromyalgia, chronic fatigue syndrome, Gulf War Veterans Illness and vulvodynia. They cause symptoms such as muscle aches, extreme tenderness and ever-present tiredness. But no one really knows what causes such syndromes to start, why they linger or how they can be controlled.

Now, a new effort at the U-M Health System aims to accelerate the understanding of these chronic multi-symptom illnesses that derail so many lives.

"We still have so many questions to answer in chronic pain and fatigue syndromes, and the answers can't come fast enough for those who are suffering right now."—Dr. Daniel Clauw, director of the U-M Chronic Pain and Fatigue Research Center, professor of rheumatology

The U-M Chronic Pain and Fatigue Research Center has launched a clinical trials registry for people older than 18 who are willing to volunteer for studies now and in the future. The studies will use a variety of techniques—from brain scanning and acupuncture to new medications and talk therapy—to help experts understand and find new treatments for fibromyalgia, chronic fatigue and other ailments.

The research will get financial support from a new fund established by the family of Gregory Shane, a young fibromyalgia patient from California. The fund is open for donations from anyone who wants to help U-M find scientific answers and evidence-based therapies in fibromyalgia and related disorders.

"We still have so many questions to answer in chronic pain and fatigue syndromes, and the answers can't come fast enough for those who are suffering right now," says Dr. Daniel Clauw, the center's director and a professor of rheumatology at the Medical School. "By having a registry of patients we can turn to when we need participants for a trial, and a fund dedicated solely to supporting research, we help to make progress faster than ever before."

He credits the Shane family for leading the fund-raising effort. They established the Gregory Shane Fibromyalgia Fund in honor of a young man whose life changed almost overnight when he developed constant pain, weakness, and sensitivity to light and sound while in his senior year of college. He went from an active, athletic student and actor, with plans to teach in under-privileged areas, to being unable to walk, drive or lift things.

He has made strides in coping with his disease through exercise, biofeedback and therapy, and he received help in finding a medication he could tolerate. Now, he is teaching theater to elementary school students, and driving again, but he still feels pain constantly.

To donate to the fund, contact Heather West at (866) 860-0026 or (734) 647-1619, or at heawest@umich.eduTo donate online using a credit card, visit http://www.
medicineatmichigan.org, click "Give a Gift Today" and enter the fund's name on the donor form.

Clauw notes that the registry needs people with a variety of conditions, and healthy people who can act as comparisons.

For more information on the registry, the fund and the center, visit http://www.med.umich.edu/painresearch or call (866) 288-0046.

Goal of new registry: Finding answers to painful questions

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