Chronic Fatigue Syndrome: A trying condition
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.
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.
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
"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,"
"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."
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
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
"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
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
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, www.ncf-net.org).
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
"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
"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
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
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