Aggie Sanders used to jog daily, go to work as an oncology nurse at St. Agnes Hospital and host weekly dinner parties for family and friends.

Now the 53-year-old barely has the energy for an hour-long conversation.

The Foxhall Farms resident has chronic fatigue syndrome, an illness she first developed more than three years ago.

According to the Centers for Disease Control and Prevention's Web site, the illness is "profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity."

Neither the definition nor the name do the disease justice, Sanders said.

"It makes it seem like something very ... " she said, pausing to consider her next words. "Maybe a little bit worse than a cold," Sanders said as she continued. "Fatigue doesn't express what this feeling is. It's like, fatigue is to chronic fatigue syndrome the way splashing in the bath tub is to a tsunami."

Next week, the Maryland Science Center on Light Street in Baltimore will host an event to help raise the public's awareness of the condition.

A traveling photo exhibit called "The Faces of Chronic Fatigue Syndrome" will be on display June 23 through 29 in the BodyLink Gallery at the center.

Sara Collins, a spokeswoman for the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, said the exhibit helps show an illness in which most victims "don't look sick."

The exhibit includes the stories of what eight people living with chronic fatigue go through.

"The exhibit is very dramatic and moving," Collins said. "It really shares a lot about what these people experience having chronic fatigue syndrome."

For Sanders, that experience meant the loss of her career, months without leaving her bed and guilt for the stress the illness placed on her family.

She and her husband, Michael, have three grown children, two daughters and a son.

Sanders first became sick while in Nashville for a nursing conference in November 2004.

She thought she had a case of burnout and the flu and tried to fight through it. But the level of fatigue she felt was frightening, she said.

"It was like this heaviness just came over. It felt like somebody had just poured cement into my legs," Sanders said.

When she returned home, she tried to continue working.

But her fatigue forced her to cut back her hours.

Eventually, even that became too much.

"February 16 (2005), I was at work and I just basically collapsed. A nurse there had to kind of throw me in her van. I don't even remember, truly. But she drove me home and I went to bed," Sanders said. "I didn't get up for a couple of months."

She tried to return to work a year later when she started to feel a little stronger. That attempt brought on a relapse of the illness and several months in bed.

Sanders eventually had to give up her job.

About 25 percent of the estimated 1 million to 4 million Americans who suffer from chronic fatigue syndrome can't continue to work, according to Dr. Peter Rowe, director of the chronic fatigue clinic at Johns Hopkins Children's Center.

Rowe, who specializes in adolescent cases of the disease, said the range of people thought to have the disease is so wide because many cases go undiagnosed.

The illness has a somewhat negative connotation, since people don't understand that it's more than just feeling a little run down, Rowe said.

"One of the parents of a patient I was treating said, 'It's true that chronic fatigue syndrome isn't life threatening, but it takes your life away.'"

Researchers don't know the exact cause because it has a variety of starting points, he said.

Rowe said it may be genetic because he's seen it in families, but researchers haven't found a specific gene for it.

The disease is often triggered by another illness, such as the Epstein Barr virus, a type of mononucleosis, he said.

That's how the illness started in Sanders, although she thought it was just burnout from her physically and emotionally demanding job at the cancer center.

She said she's since learned to change her expectations and even her personality.

She said she's learned to monitor her activity and only do things for five to 10 minutes, then rest.

"You've got to figure out how to be happy," Sanders said. "Because you can't say, 'I'm going to wait. I'm going to be happy once I'm all better.' Because I might not feel better.

"The extrovert has to learn to live like an introvert. The social butterfly has to learn to live like a monk."

According to the Web site for the Centers for Disease Control and Prevention, some people with chronic fatigue syndrome remain homebound while others can resume work and other activities.

Recovery rates are unclear and full recovery is rare, according to the site.

Next week's special exhibit is included in the price of admission to the Science Center. Cost is $14.50 for adults, $13.50 for seniors over 60 and $10 for children 3-12.

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user comments (1)

user bporter says...

After ten years of CFIDS I have learned that everything I do has a price. Doing the laundry means a day in bed. Cleaning the house may cost me weeks or months of fatigue, head pain, body aches, "brain fog" and so much more. I have also learned that I can plan nothing ahead of time. Family and social events are missed, postponed and eventually continued without my presence. Medical help is slim to non-existence as so many health care professionals know little about CFIDS (could there be a worse name?) and often don't believe in its existence. Diet, exercise, psycho-therapy and anti-depressants about sums up the medical advice.

Posted 1:39 PM, 06.22.08

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