05/16/2007

Tired of feeling ill

Conference focuses on Chronic Fatigue Syndrome

By AL PARKER
Special to the Record-Eagle

Record-Eagle/Tyler Sipe
Traverse City resident Lori Tylutki was diagnosed with Chronic Fatigue Syndrome in 2004. The syndrome left Tylutki in bed for nearly three years and was often mobile only using a wheel chair. Tylutki and other speakers will take part in a one-day conference at the Grand Traverse Resort and Spa on Saturday.

Medical Conference

The 7:30-11 a.m. session is for health care providers. The Centers for Disease Control and Prevention, the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America and the Michigan CFIDS Association are co-sponsoring the conference entitled: Chronic Fatigue Syndrome (CFS): Diagnosis and Management. Continuing Education (CE) credits will be available. Physicians, nurses, and other health care providers can earn CME, CNE, or CEU credits. Kenneth Friedman PhD, a CDC-trained provider, will present the course.

Patient Conference

The 1-5 p.m. session is for patients, advocates and family members. The Michigan CFDIS Association and the Traverse Area CFS-FM support group are sponsoring the conference entitled: Advances in Understanding and Treating Chronic Fatigue Syndrome and Fibromyalgia. The patient conference is designed around the needs of persons with CFS or FM. The goal is to both validate their illness and give them skills and tools that will improve and optimize their wellness.

TRAVERSE CITY — Lori Tylutki was an energetic, experienced nurse in Munson Medical Center's intensive care unit when she developed an illness that changed her life forever.

"It first began as an intestinal bacterial infection,” recalled the 48-year-old Traverse City resident. "But I never fully recovered from it and grew weaker and weaker. Eventually I was bedridden for 3½ years.”

Tylutki's search for a diagnosis was frustrating, but eventually physicians at the Mayo Clinic in Minnesota determined that she suffers from Chronic Fatigue Syndrome, or CFS. She also was diagnosed with fibromyalgia, or FM.

"About 70 percent of the people who have one of these conditions have the other,” explained Tylutki, who serves as president of the Traverse City CFS-FM Support Group.

The Centers for Disease Control and Prevention describe CFS as a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity.

"When I was diagnosed, I thought 'Well, now we have a name for this. I'll go to my physician, get treated and get on with my life,'” said Tylutki. "But it didn't go like that.”

Like most CFS patients, Tylutki was functioning at a much lower activity level than she was before the illness. She had always been active, riding mountain bikes, kayaking, enjoying whitewater rafting, boating and other activities.

That all changed.

"I was very weak,” she recalled. "The fatigue was phenomenal. I could sleep 18 hours a day. There was shooting pain, sometimes all over my body. I ended up in a wheelchair.”

In addition to constant, extreme fatigue, CFS patients report various nonspecific symptoms, including weakness, muscle pain and impaired memory, mental concentration and insomnia. In some cases, CFS can persist for years. The cause has not been identified and no specific diagnostic tests are available.

Tylutki has drawn on prescription medications, nutritional supplements and lifestyle changes to manage the symptoms as best she can.

To help educate patients, health care providers and the public, Tylutki has organized a daylong CFS conference on Saturday at the Grand Traverse Resort and Spa. The conference is made up of two sessions, one designed for health care providers and one for patients and the public.

The primary speaker is Dr. Ruth Walkotten, clinical director of Walkotten's Wellness Center in Muskegon. She has devoted 20 years to the clinical care of CFS/FM patients. Friedman will give a presentation on advocacy. There will also be exhibitors who serve the special needs of CFS and FM patients.

Despite her illness, Tylutki plans to continue helping those dealing with CFS.

"As a nurse, I am a care giving person,” she said. "I want to bring awareness not just to patients, but to the community and the medical community. I want people who have this illness to have the tools and understanding to deal with it and to let them know they have to manage their own care.”

For more information about the conference or the support group, contact Tylutki at 938-9320 or Help4cfs@yahoo.com or visit www.tccfsfm.com.