Newswise — 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 and chronic fatigue syndrome, Gulf War Veterans Illness and vulvodynia. They cause symptoms like 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 University of Michigan Health System aims to accelerate the understanding of these chronic multi-symptom illnesses that derail so many lives.
The U-M Chronic Pain and Fatigue Research Center has just launched a clinical trials registry for people over the age of 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.
Meanwhile, that 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 Daniel J. Clauw, M.D., the center's director and a professor of rheumatology at the U-M 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 fundraising effort.
Clauw notes that the registry needs people with a variety of conditions, and healthy people who can act as comparisons. People who have been diagnosed with or have symptoms consistent with fibromyalgia, chronic fatigue syndrome, Gulf War Veterans Illness, irritable bowel syndrome, vulvodynia, temporomandibular joint dysfunction, interstitial cystitis, migraine, tension headache, and multiple chemical sensitivity are all needed for studies that are open now or should be recruiting in coming months.
For more information on the registry, the fund, and the Chronic Pain and Fatigue Research Center, visit www.med.umich.edu/painresearch or call 866-288-0046.
Clauw and his colleagues at the center have developed a thorough screening process to gather as much information about a prospective registry participant as possible — information that they can use to select potential enrollees for new clinical trials.
Called STEPS for Screening to Enroll in Pain Studies, the four-hour session includes a physical examination, a series of interviews and questionnaires, blood tests and measurements of sensitivity to pain. The assessment is done at the Center's offices in the Domino's Farms complex in Ann Arbor, and registry participants must be able to travel to Ann Arbor as needed for any studies they take part in.
After the screening, eligible participants will be enrolled in the registry, and contacted when U-M researchers are recruiting volunteers with similar characteristics. For example, a fibromyalgia patient in his 40s might be told about a study that will examine how sleep deprivation affects symptoms. Or a 25-year-old with irritable bowel syndrome might be tapped for a study that uses advanced functional MRI brain scanning to see what areas of her brain "light up" in response to a mildly painful thumb squeeze.
In all, the registry's participants will be called upon for studies focusing on four main themes: * The basic mechanisms of chronic multi-symptom illnesses, especially their possible basis in central nervous system processes.* Potential 'triggers' such as physical injury, emotional stress, and changes in sleep or exercise.* The effect of various ways to manage and treat the symptoms, including cognitive-behavioral therapy, acupuncture, medication and aerobic exercise.* Other research areas such as ways for doctors to assess these syndromes in a standard way, or specific symptoms such as pain, fatigue, and memory difficulties.
The U-M team has already made great strides in these areas through past research, including landmark findings about alterations in the brain's pain-processing areas among people with fibromyalgia, and successful studies of new drugs. They have won numerous research grants from the National Institutes of Health and private foundations and companies to support further studies.
But more funding is needed to help answer other questions that U-M scientists want to address, and make progress to help patients today and tomorrow.
That's why the Shane family of Santa Monica, California, 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.
Greg 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 via exercise, biofeedback and therapy, and received help in finding a medication he could tolerate.
Now, Greg is teaching theater to elementary school students, and driving again, but still feels pain constantly. His parents, Lynn and John, decided they wanted to establish a fund in his honor that would support research aimed at understanding and alleviating the effects of fibromyalgia. They searched the nation for a research team to support, and found the U-M center after reading of its achievements.
The Shanes' own generous donation got the fund started, but now they're working to attract new donors from around the nation. "We wanted to honor our son's struggle, and that of other fibromyalgia patients like him, by giving to a team that we know is on the cutting edge of research and working to pave the way for new and better treatments," says Lynn Shane. "We hope others will give in the name of someone they love who has battled this same illness."
To donate to the Gregory Shane Fibromyalgia Fund, contact Heather West at 866-860-0026 or 734-647-1619, or at [email protected]. Or, to 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.