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September 7, 2004

Chronic Fatigue Syndrome: A trying condition

By Julie Phillips Jordan

In 1976, Bob Mulligan was a student at the University of Georgia and a rising track star. In high school, he had run a 4:14 mile. At UGA he played lacrosse and ran cross country. He was on his way toward serving in the Air Force and earning two master's degrees.

But 10 years later, during his honeymoon trip to Lake Tahoe, he came down with an illness that today often leaves him so sick and exhausted, he barely can make it from his bedroom to his bathroom. He hasn't been able to hold down a full-time job in years and instead has watched his degrees, his honors, his career, the life he strived for, fall by the wayside.

The illness Mulligan suffers is one that affects - according to the Centers for Disease Control Web site - an estimated half a million people in the United States.

Most commonly referred to as Chronic Fatigue Syndrome, it's an illness with many complications and controversies. There is, so far, no definitive test yet for CFS. And because the symptoms are varied, attempts at treatment often lead to a barrage of tests that puzzle doctors.

For people who have been diagnosed with CFS, the level of disability varies; many are not able to work or function normally on a daily basis.

All in all, these things add up to a tremendous difficulty for those suffering from CFS as they attempt to cope with it.

A bad name

"It's a name that's been forced on us," said Massachusetts resident Gail Kansky, of Chronic Fatigue Syndrome. "Everyone has fatigue. But with this ... it makes it difficult to lift your arm to brush your teeth."

"People who hear (you have CFS) say, 'Oh, I know how you feel. I'm tired all the time, too,'" said Jeanne Redmon, who lives in Athens and has suffered from the multiple, incapacitating symptoms since 1967.

Kansky, along with Redmon, Mulligan and their many peers, prefer the slightly more descriptive term Chronic Fatigue Immune Deficiency Sydrome, or CFIDS, which recognizes the vulnerability to other illnesses and infection for those suffering from the syndrome (outside the United States, it's known as myalgic encephalomyelitis).

Kansky, president of the National CFIDS Foundation which has thousands of members across the country, said CFIDS is, at its core, more like an "overwhelming weakness."

"It's bone-tired," described Mulligan, who now lives outside Atlanta. "And there are terrible headaches, sensitivity to light and smells," he said before running through a list of chronic, searing pains and aches. "It's like having the flu all the time."

Still, "fatigue" is the overriding descriptor people recognize when referring to the illness.

"I said, 'Tell me something real,'" Mulligan said when a doctor labeled his symptoms as CFS. "I said, 'What the hell is that?'"

"I didn't even believe (CFS) existed," said Athens resident Becky Carter.

"Because of (the title of 'fatigue'), people just don't understand. And that's one of the hardest things about it," Carter added. The mother of three, Carter came down with mononucleosis about five years ago. "I thought it was no big deal, I'd get over it." Today, Carter feels much worse now than she did when she came down with mono and isn't really sure when the mono ended and the CFIDS began. But she does know she doesn't live the life she once did.

"I think one of the most important things is that people understand this is not just an illness where you're tired," Carter said.

"People might see me at the grocery store, and I look OK, so they think I'm better," said Deborah Schmidt, who eight years ago was an associate professor of linguistics at UGA before she developed CFIDS. "But what they don't know is that that trip to the grocery store will cost me the next two to three days in bed, to the point that I may not have even enough energy to get up to take a shower. This is the typical experience for people with (CFIDS)."

"I've had to deal with these feelings of shame for telling people this is what I have," said Carter, "because it makes it sound like you're just (lazy). You feel so desperate because you want people to understand how hard it is, how much pain you're in. ... And there have been times when I've started to doubt myself. You know, you'll have a day where you're feeling better and you get out and walk a mile. And then you can't get out of bed for a week."

Multiple ailments

In addition to CFIDS, many of the people interviewed for this story suffer from fibromyalgia, another painful condition that often accompanies CFIDS and other chronic illnesses.

But there's a long list of other conditions that accompany CFIDS. Redmon pulls out a sheet of notebook paper on which she's written down all the pains and ailments she's suffered over the years. Both sides of the page are filled. She describes pain in her nerve endings so intense she can barely move sometimes.

And when there's a virus or cold going around, it's easy to remember the "immune deficiency" part of the syndrome.

Carter pointed to a swollen lymph node on the right side of her neck and face and recounted a cold she'd gotten several weeks ago that quickly escalated into an infection. Just days ago that gland was swollen to the size of a baseball, she said, as though she barely could believe it herself.

"People think you're neurotic," Redmon said. "I've been convinced I was having a heart attack, I was having all the symptoms, and then after a few hours all of those symptoms would completely disappear, and I'd feel pain somewhere else."

There's a quote from Oregon doctor Mark Loveless that's well known in the CFIDS community. Though Loveless now works exclusively with AIDS patients, he did work with CFIDS patients for a number of years and told a convention in 1992 that, having treated more than 2,000 AIDS and CFS patients he found his "CFS patients are more sick and more disabled every single day ... than my AIDS patients are in the final two weeks of life."

Difficulty in diagnosis

Though Redmon and others are encouraged by current research, CFIDS remains a misunderstood and misdiagnosed illness.

Though there is no test to positively determine if a patient has CFIDS, Kansky said the National CFIDS Foundation is working toward funding research, with a number of breakthroughs emerging (for more information, visit the NCF Web site,

Redmon and Carter said they've had difficulty finding treatment, and Web sites and other literature on CFIDS note an overall dismissal by the medical profession when it comes to the illness.

"I think a lot of doctors don't want to take on CFIDS patients because it's such a difficult thing, with so many symptoms, and no (definitive) test for it," Redmon said. "So it's not possible, at this point, to cure it. And I think a lot of patients get angry with their doctors because they're not getting any real answers. I know for years I went through some of the most off-the-wall tests, but they all came up negative for (whatever the doctors were thinking) I had."

"I've read just about every book I could find on the subject (of CFIDS)," added Carter. "And there are a lot of them out there that have been written by quacks, which doesn't make it any easier."

Living with CFIDS

In her home in the Cedar Springs subdivision, Redmon invites friends and family to "flop down on the bed" with her. Since she spends so much time there, she's made her room comfortable for visitors. Her computer is within reach of her bed. "It's difficult for me even to sit down most of the time," she said.

Despite their chronic pain, Redmon and Carter each are cheerful and positive.

"I just remember hearing a voice one day saying, 'Accept, accept, accept,'" Redmon said. "And that was a real turning point for me. I had fought against (CFIDS) for so many years and tried to find a cure (myself), haunting bookstores, going to every doctor I could find. But there came a time when I just had to accept that I had this and keep going from there."

"And just because we say 'accept' doesn't mean we've given in," Carter added. "It's just that we're learning to live with it."

"Eventually you learn to manage your life around it," Mulligan said. "I know that I have to stay in bed 'til 10 a.m. or so every day, and that my energy might last until about 4 or so on a good day. There's no medicine or cure that's going to make it go away, so you have to manage your life around it."

Though Mulligan can't pursue the career he'd once planned, he is able to run a small Internet business.

For Redmon, managing her life around CFIDS has led to organizing a support group for others like her.

Each month, she brings people together at the Counsel on Aging in Athens for the Athens CFS/FM/MCS (Chronic Fatigue Syndrome/Fibromyalgia/Multiple Chemical Sensitivity) support group meetings for caregivers, loved ones and people with the illnesses alike. She also publishes a monthly newsletter for the group called The Helping Hand.

But though she remains positive ("I've never had the depression a number of people say they get with this," she noted), sadness about her life does creep in sometimes.

In the midst of talking almost lightheartedly about her laundry list of severe aches and pains, she becomes momentarily mournful when it comes to those she loves.

"I just hate it - I was telling my grandson that I just hate that when I die, all he's going to remember about me was that I was in bed all the time," Redmon said. Then she brightened. "But he said 'Oh, Gram, you've always been there for me.'"

It's a soothing thought for Redmon, a temporary respite in a life of pain.

"There have been some good things that have happened (as a result of having CFIDS)," she said. "I try to stay focused on that."

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