For Hannah Vogel and Megan Lauver, a walk around the block could mean days of exhaustion. They have learned to live with the frustration of daily uncertainty, where simple activities have the potential to sap much more energy than they should.
Vogel, 20, and Lauver, 19, suffer from chronic fatigue syndrome, a disease with often debilitating effects and no known cause. People with CFS report feeling exhausted after physical or mental exertion, exhaustion that does not improve with rest.
The women, both from Columbia, hope to raise awareness of CFS with a fundraiser at Brunswick Bowling Center, in Columbia. The event, called Bowl Away Chronic Fatigue Syndrome, is scheduled for Saturday, July 9, from 1 to 4 p.m.
It's an important cause for Lauver and Vogel, who've had their lives disrupted by the illness.
Vogel, a graduate of Oakland Mills High School, first started experiencing symptoms of CFS in August 2009. She had taken a gap year to be a member of the Baltimore Ravens marching band and work as a hostess, and she was just about to start her freshman year at St. Mary's College of Maryland.
Two weeks before orientation, she came down with what she thought at first was a bad case of the flu. She had chills and horrible nausea. She couldn't eat and felt weak all the time. She ended up losing 10 pounds.
"Every day I thought I'd be better tomorrow, but I wasn't," she said.
Vogel struggled through her first semester of college. Doing homework was difficult: Mental activity —- even looking at a computer — can drain the energy of CFS sufferers.
"I just couldn't go back after that semester," she said.
It wasn't until a year after Vogel's symptoms began that she found her way to Dr. Peter Rowe, director of the Chronic Fatigue Clinic at the Johns Hopkins Children's Center. Rowe has helped "an amazing amount," she said.
Similar stories, goals
Vogel and Lauver met through Rowe's clinic at the beginning of this year. The two became friends, sharing their experiences with CFS. Vogel taught Lauver how to knit, an activity that both can enjoy without getting worn out.
Lauver's own story is similar to Vogel's. Her symptoms began after she got her wisdom teeth out in 2007. Five months later, she came down with a case of strep throat and started feeling sick constantly.
Lauver was a senior at Hammond High School at the time, and she almost didn't graduate. "I could barely get through class," she recalled.
She began seeing Rowe last June. When she first came to his clinic, she reported that she spent about 18 hours a day lying down. Now, thanks to a treatment plan that includes physical therapy, Lauver works five days a week, practices yoga and goes on runs.
"In both of my jobs there's a lot of standing, and I never would have been able to do that before," she said. Lauver shadows at a physical therapy clinic two days a week and works at a lab the other three. She wants to become a physical therapist to help CFS patients after she graduates from Johns Hopkins with a degree in behavioral biology and philosophy.
In fact, both women want to reach out to others with chronic fatigue syndrome. One of the first things Lauver mentioned when the two met was that she hoped to host an event to promote awareness of the illness and to raise money for Rowe's clinic.
Vogel was immediately on board with the idea. "It's been so hard not knowing what was possibly wrong with me," she said. "That's part of our goal: — educate people so that they can get diagnosed."
Tough to diagnose
While people have experienced symptoms of chronic fatigue syndrome for years, it only acquired its current name in 1988 and an official definition in 1994.
Part of the problem is that symptoms of the disease can be very similar to symptoms of other illnesses. Patients with Lyme disease, celiac disease and depression, among others, can all experience fatigue.
"The diagnosis of CFS is one of exclusion," said Rowe, who founded the Hopkins clinic, the only of its kind in the United States, in 1997.
Rowe said CFS is distinguished by extreme and protracted fatigue that can last 24 to 72 hours after exertion. Other symptoms include difficulties with memory and concentration, feeling unrefreshed by sleep, muscle and joint pain, headaches, tender lymph nodes and malaise after exercise, according to the Centers for Disease Control and Prevention.
About 1 million Americans have chronic fatigue syndrome. Rowe cited a study that estimated the economic impact of CFS was about $20 billion.
"It's one of the most common causes of disability in adults and of school absences in children," he said.
Despite these figures, many patients, including Vogel and Lauver, have had to deal with a perception that they are exaggerating their condition or that it is entirely psychological.
"It can be very disheartening to feel like the world's against you," Vogel said.
Through the end of June, they said they have heard from at least 10 people who might have CFS, and their event has sold about 45 tickets and raised $500.
"It's been really great and it's brought a lot of people together," Lauver said.
Rowe said he was happy to see Lauver and Vogel putting their newfound energy into helping others with chronic fatigue syndrome. "One of the most gratifying parts of my job is watching patients with CFS get back into the swing of life," he said.
For more information about Bowl Away Chronic Fatigue Syndrome and to purchase tickets, call 410-440-1046, email firstname.lastname@example.org or go to the "Bowl Away Chronic Fatigue Syndrome" page on Facebook. Brunswick Bowling Center's address is 7100 Carved Stone, Columbia, MD, 21045.