Station: Cable News Network (CNN)
Date: Oktober 24, 1999
Programme: CNN & Time
SICK AND TIRED
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ANNOUNCER: CNN & TIME. Tonight, "Sick and Tired." It's been called the yuppie
flu, but it's been anything but a passing fad. It is a major public outcry.
We all have days when it feels like we just can't roll out of bed. We're
tired, listless, completely drained. But imagine feeling that way and worse
day in and day out for weeks, months, and even years.
JEFF GREENFIELD, HOST: We're talking about chronic fatigue syndrome, the
mysterious, debilitating illness that first showed up in the mid-1980s. And if
you thought that this yuppie flu was the invention of hypochondriacs or had
gone the way of Duran Duran or somehow had been cured, consider this. In the
United States alone right now, hundreds of thousands of people may be
struggling with CFS.
Here's Daryn Kagan.
(BEGIN VIDEOTAPE)
DARYN KAGAN, CNN CORRESPONDENT (voice-over): As the 1999 Women's World Cup
came down to the wire in penalty kicks, another drama was taking place behind
the scenes.
MICHELLE AKERS, U.S. WOMEN'S SOCCER TEAM: I'm graying out, and I can't hear,
and my body's just clenched.
SPORTS ANNOUNCER: Look at Akers. She leads by example.
KAGAN: Michelle Akers played 90 minutes in blistering heat, until her body
gave out.
SPORTS ANNOUNCER: All eyes are on Michelle Akers.
AKERS: So they put me on the table and then started trying to get the IVs in.
KAGAN: Akers' doctors, coaches, and teammates know her symptoms are real, but
some people think the disease she's recovering from, chronic fatigue syndrome,
is not.
(on camera): When you say worst, what does worst feel like for people who
don't know what that feels like?
AKERS: It's like just feeling totally empty on the inside. It's like --
there's no reserve, no energy. It's like a black hole in the very depths of
your soul.
(voice-over): For years, CFS has been dismissed by many in the general public,
the medical profession, even experts at the Federal Centers for Disease
Control and Prevention. Fifteen years ago, a mysterious illness swept through
the Alpine resorts and towns near Lake Tahoe. Incline Village, Nevada, was
ground zero.
DR. DAN PETERSON, PHYSICIAN: The first ones were isolated cases. A marathon
runner in town who couldn't run any longer.
KAGAN: Dr. Dan Peterson is a local physician. He saw the first cases.
PETERSON: Then we started seeing the clustering with the girls' high school
basketball team where the entire team became ill -- extremely ill.
KAGAN: At Tahoe-Truckee High School, dozens of students came down with
symptoms resembling mononucleosis. So did a third of the teachers.
JERRY KENNEDY: You're not tired. You're -- it's like the blood's drained out
of you.
KAGAN: Like Jerry Kennedy who taught auto mechanics and drafting and his wife
Janice (ph) who taught English.
JANICE KENNEDY, FORMER HIGH SCHOOL TEACHER: It's like having bricks piled on
you. It's as though you're fighting to move at all.
JERRY KENNEDY: It's the worst feeling I've ever had in my life. I can't
compare it to anything else that's ever happened to me.
KAGAN: The number of cases multiplied during the summer of 1985.
PETERSON: That's when I first thought, well, there's some new contagious
disease, you know, I mean, there's something in the water, some Typhoid Mary
had come into the school system and affected the kids and the teachers.
KAGAN: Besides fatigue, most patients developed a bizarre mental fogginess.
JERRY KENNEDY: You feel dumb because you can't remember things. You forget
people's -- you don't even comprehend the names. You lose it.
JANICE KENNEDY: As an English teacher, I remember one horrible moment when I
asked myself, "What is a subordinate clause?" I could not remember what a
subordinate clause was.
KAGAN: Eventually, more than 250 people living around Lake Tahoe seemed to
have the illness. For months, Dr. Peterson couldn't persuade anyone to
investigate. Finally, the CDC agreed to send a two-man team.
JANICE KENNEDY: They didn't seem to feel that there was an epidemic, and we
knew there was. It might have been small, but it definitely existed.
DR. WILLIAM REEVES, CDC EPIDEMIOLOGIST: CDC's study at that time failed to
identify any evidence that there was an unusual occurrence of a chronically
fatiguing illness.
KAGAN: Dr. William Reeves is the CDC epidemiologist now in charge of
investigating chronic fatigue syndrome. He didn't go to Incline Village, but
he defends the team that did. He also defends their findings, which are still
controversial today. REEVES: Using epidemiologic public expertise of the time,
there was no evidence, clear-cut, replicable evidence that anything unusual is
happening in that population.
PETERSON: As I just said right now, I'm right about this. I know that these
people were well, and now they're sick, and they're staying sick. So I have to
hang in there and be diligent about it, regardless of what the rest of rest of
the world thinks.
KAGAN: Over the years, chronic fatigue syndrome has been thought of as a
trendy illness, the yuppie flu. Sufferers say the official name the CDC gave
it didn't help.
JANICE KENNEDY: Ever since they started calling it chronic fatigue syndrome, I
think every person who has had it, every family member of someone who has it,
every doctor who is familiar with it hates that name because it seems to
trivialize.
KAGAN: A diagnostic test for CFS has yet to be developed, but the CDC did come
up with a definition: debilitating fatigue lasting at least six months, along
with four of eight other symptoms. They include sore throat, muscle and joint
pain, short-term memory loss, and an inability to recover from exertion. New
cases have continued to crop up all over the country. Michelle Akers first
noticed her symptoms in 1991.
AKERS: I would go into the shower after training and just cry and cry and cry.
It was the only place I could go to where no one would see me and just say, "I
can't do this. I can't do it."
KAGAN: Akers sidelined herself for almost an entire season in order to
recover, but when she came back to soccer, she suffered constant relapses.
Still, she kept the illness secret from her teammates, friends, even her
family. Finally, in 1996, Akers went public. She wrote an emotional letter to
Congress describing a day in the life of a typical sufferer.
AKERS: That was the first time I admitted publicly even to my folks how bad I
was actually feeling, and I read it to my dad over the phone. I remember my
dad was just stunned.
KAGAN: And so were some members of Congress who voted to give millions of
dollars to the CDC to solve the mystery of chronic fatigue. But less than half
actually went directly to CFS research. That led to another mystery. What
happened to the money?
(on camera): This year, federal investigators found out. The CDC diverted
between $9 and $13 million dollars, money that Congress had specifically set
aside to study CFS. Instead, it was spent on other diseases, like polio and
measles.
(voice-over): It was Dr. William Reeves, the head of the government CFS lab
who helped bring the diversion to light. He says he did so after a superior
asked him to lie about how much money was going to CFS research.
REEVES: I felt that the best thing to do was just to report this to Congress,
and that's when I formally blew the whistle.
KAGAN: But not before CDC officials gave inaccurate and misleading information
to Congress about how the money was spent. But why was the money taken from
CFS in the first place?
REEVES: It was taken from chronic fatigue syndrome because it was not
perceived by the people doing it as important as the other ones, not perceived
as an infectious disease.
KAGAN: The CDC's current director, Dr. Jeffrey Koplan, says all the missing
money will be restored over the next four years, and while nobody was fired,
the division overseeing CFS has been put on probationary status.
DR. JEFFREY KOPLAN, CDC DIRECTOR: CDC, in regard to chronic fatigue syndrome,
misspent funds allocated to us for chronic fatigue syndrome, and for that, we
sincerely apologize to all parties involved and in particular the people and
their families that suffer from chronic fatigue syndrome.
REEVES: We were set back. There is no question about that. We were set back
substantially. Programs suffered because of this. This has probably set us
back three to five years.
JERRY KENNEDY: I'm not surprised that the money went someplace else. Somebody
had the power to move it some other place, some pet project they had, and they
did it.
KAGAN: Perhaps the government's premier laboratory didn't make CFS a priority,
but other researchers have. Dr. Dedra Buchwald, a Harvard-trained physician,
arrived in Incline Village after the CDC left, and she's been studying CFS
ever since. She believes she's on the verge of a breakthrough. She's designed
a unique study using identical twins. She compares sick twins to their healthy
counterparts, trying to detect differences caused by CFS.
DR. DEDRA BUCHWALD, CFS RESEARCHER: So they'll put the electrodes on your
head, and then what they do is -- they'll monitor your brain waves.
KAGAN: Mary Nelson (ph) and Martha Williams (ph) are the 21st pair of twins to
take part in Buchwald's study. Martha was an Arkansas state trooper for 20
years, until a series of worsening symptoms forced her into early retirement.
MARTHA WILLIAMS, FORMER ARKANSAS STATE TROOPER: I always had a reason for why
I was hurting. It was either the leather gear or the bulletproof vest. The
boots. Getting in and out of the car. The headaches was from my hat. Or my
eyes hurt because the sun...
KAGAN: Mary is a construction worker in Missouri. She's still on the job.
MARY NELSON, CONSTRUCTION WORKER: Oh, yes. Yes. Anything they've got that
comes in by delivery, if I'm -- I happen to be at the warehouse, I'm unloading
it. KAGAN: Researchers aren't supposed to know which twin is sick, but it's
pretty obvious. Martha's symptoms - fatigue, muscle pain, difficulty thinking
and sleeping -- are familiar indicators of CFS.
WILLIAMS: Your legs hurt. It feels like you're walking on needles. In the
night while you're trying to sleep, you wake up, and it's hard to describe to
someone, but it's like your arms and your legs are asleep, or they're numb but
they hurt.
(BEGIN VIDEO CLIP)
CFS RESEARCHER: Here we go. Just stare at that thing, and if you have to
blink, blink all at once, get it over with.
(END VIDEO CLIP)
KAGAN: For an entire week, the twins were put through a battery of tests,
tests to measure exercise tolerance, memory and thought processing, sleep
disturbances, and blood hormone levels.
BUCHWALD: What we thought was that there would very substantial differences
between the healthy twin and the sick twin.
KAGAN: But there wasn't. Both twins performed low on many of the tests.
Buchwald believes it's because both twins have a genetic predisposition to
CFS.
BUCHWALD: Right now, our thinking is just that there is a group of people that
are vulnerable or that are likely to be vulnerable to get CFS.
KAGAN: Buchwald's study presents a new option, that hereditary plays a major
role in chronic fatigue.
BUCHWALD: Most people who have that predisposition will never get chronic
fatigue syndrome, but for an unfortunate few, they will be exposed to some
series of triggers or trigger, which could be anything from an infectious
illness to an episode of depression or a motor- vehicle accident, that will
trigger this chronic fatigue syndrome.
KAGAN: Meanwhile, the Centers for Disease Control is still trying to catch up.
KOPLAN: We're looking at what we have now, what resources we have in terms of
people and laboratory techniques, what studies need to be done, who else we
need to involve from outside in giving us more information. So we're trying to
set a forward course in saying how can we make a difference with this disease.
KAGAN: They're starting with a new national head count. As recently as two
years ago, the CDC believed only 10,000 Americans had the illness. Now the CDC
says, based on a study in Wichita, Kansas, that number is actually 40 times
higher. Today, the CDC estimates 400,000 Americans over age 18 have active
CFS.
REEVES: This is a major public health problem, and as I said, in Wichita at
least, this is about a quarter the number of people that have -- women that
have breast cancer, and it's about four times more than the number of women
that have cervical cancer.
KAGAN: But 15 years after the outbreak of CFS in Incline Village, Nevada, the
man who first identified the illness expected to be further along.
PETERSON: I mean, the CDC is still counting heads, still saying this disease
exists, and here are the numbers. Well, we -- I never expected to be here
still quandering (ph) this problem 15 years later. I really didn't.
KAGAN: Recently, Peterson did his own follow-up of 180 of his original
patients.
PETERSON: About 30 percent of them are still severely disabled. The remainder
have had substantial or at least partial improvements.
KAGAN: And how many are completely recovered?
PETERSON: None.
(END VIDEOTAPE)