Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Sun Current: Chronic Fatigue Syndrome An Up-and-Down Battle for Edina High Alum

Author Andrew Wig

Some parents of 20-somethings yearn for the day when their children finally leave the nest. Lianne Beyerl just yearns for a cure for a mysterious condition that leaves its victims homebound and exhausted.

Beyerl’s search for answers began six years ago when her son, Jeff Beyerl, was a senior at Edina High School. At 6-foot-7, he was a captain of the swim team. He was preparing for college, planning to become a teacher.

Then, as he was just beginning his final year of high school, Jeff got sick. At first, they thought it was a bout with the flu, but that changed as the battle dragged on. Finally, two years ago, Beyerl said, a doctor at the University of Minnesota’s neuromuscular clinic diagnosed Jeff with Chronic Fatigue Syndrome, which the Mayo Clinic defines as “a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition.”

 

As part of the fight for her largely homebound son, Lianne has organized an informational event at Southdale Library. The free event is scheduled for 1-4 p.m. Saturday, Sept. 16. The program includes a screening of the documentary, “Unrest,” which chronicles the struggles of people with Chronic Fatigue Syndrome.

Following the screening, Linda Tannenbaum, CEO of the Chronic Fatigue Syndrome advocacy organization Open Medicine Foundation, will answer audience questions. Similar to Lianne Beyerl, Tannenbaum calls herself “a mother on a mission.” Her daughter came down with the condition in 2006.

Some victims of the affliction tire from the faintest exertion.

“Some people say, ‘I can either cook dinner, or I can get dressed today.’ Literally,” Tannenbaum said, adding that for others, it’s worse.

“Some people don’t have the energy to turn over in their bed.”

One challenge in raising awareness and securing research dollars is how hard it is to pin down as a pathology, but a hallmark of the affliction is a post-exertion malaise that can be both physical and mental, Tannenbaum noted.

Lianne Beyerl isn’t the typical busy-body accustomed to event planning. In fact, the occupational therapist has never organized an event like the one set for this weekend. “It’s only because I’m a pitbull mother,” she said, having tired of watching her son’s condition ebb and flow for his entire adult life.

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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