Transcript Prime Time Live ME -- 27 march 1996
Bijdrage: Bob Hutchison / Elaine Blanchard
Transcript Prime Time Live ME -- 27 march 1996
PRIME TIME LIVE, Wednesday 3/27/96 Segment: Sick & Tired. The Players:
Sam Donaldson, Nancy Snyderman, M.D. [Good Morning America], Paul Cheney,
M.D., various PWCs, Hillary Johnson [Osler's Web author], Elaine DeFreitas
Sam Donaldson: A mysterious ailment surfaced more than a decade ago which
some experts say has affected more than 2 million people across the country.
You might assume that federal medical researchers have been actively
investigating its cause and possible cure. But a new book, "Osler's Web" by
Hillary Johnson, charges that for too long the government dismissed the
disease, with devastating consequences. Good Morning America's Dr. Nancy
Snyderman travelled to Ground Zero to learn more.
Nancy Snyderman: [walking beside Lake Tahoe, near Incline Village] There
were no warnings, no signs in the fall of 1984 that life would be any
different in Lake Tahoe than it had been in all the months and years before.
For most people, nothing looked different, nothing was different. But for
some, a shadow began to fall over everything that was familiar. [ominous music]
Male PWC: I was totally disoriented, stepping out my front door literally
into the street and not know where I was. We had very bright individuals
who had difficulty finding their way home from the grocery store, getting
lost in a small town.
Female PWC: Things were shifting. I couldn't figure out if I was sitting
at an angle or if the rest of the world was.
NS: It seemed like many in the Tahoe area were suddenly coming down with a
bad flu, developing a weird kind of dementia and an almost total loss of
energy. Dr. Paul Cheney was mystified; he had never seen patients like this
in all his years of practice or study. Neither had his partner.
Paul Cheney: This seemed to be like evolving before our eyes from a
flu-like illness into something else.
PWC Kelley Jeffery: Your body is just limp; it's like a wet noodle.
PWC Jerry Crum: At my worst, my IQ had dropped to 85, which is borderline
mental retardation, so I'm told.
NS: Something serious was happening, but Cheney didn't know what it was.
Lab test after standard lab test showed nothing, and it seemed to be
spreading, through the local hotel and casino, two area high schools,
members of a girls' basketball team.
PC: That's when we wondered hey, maybe we oughta call somebody--this is
NS: They called the CDC, the Centers for Disease Control and Prevention,
the government agency in charge of tracking epidemics. But instead of
coming to the rescue, the CDC just kept putting them off.
PC: I remember calling them from time to time and saying, the numbers are
up to a hundred and ten, and then the numbers are up to a hundred and
twenty, and you wouldn't believe what I saw today.
NS: By September 1985, Cheney and Peterson had been calling the CDC for
months pleading with them to investigate the outbreak in the Tahoe area.
Now they had a hundred and fifty patients, many of whom had been disabled
for months. Their hopes the CDC would send investigators were fading when
suddenly the CDC called! Investigators were coming. FINALLY, they thought,
someone is coming to help. They were wrong.
PC: This illness required that you just stare at these people and just
listen for long periods of time and that's exactly what they didn't do.
NS: Instead, according to Cheney, the CDC investigators looked at their
charts and test results, took some blood samples, and headed back to the CDC
without a word.
PC: It was as if they just sort of disappeared.
NS: Alone again, Cheney and his partner wouldn't give up. They had a
theory that required using over $200,000 of their own money to order MRI
scans of their patients heads. That's when they got their first big break
and discovered that their patients had lesions on their brains.
PC: We took a stack of them to a neuroradiologist and showed them to him
and he said, "Very interesting, let me show you these." And I said yeah,
that looks just like mine. I said, "Who are these?" He said, "These are
NS: Another lead. The similarity to AIDS might mean his patients had
immune system problems. That's where Cheney decided to look next.
Meanwhile, at the CDC, the mood was anything but urgent.
Hillary Johnson: The tone behind the scenes at the CDC was one of complete
and utter ridicule.
NS: Reporter Hillary Johnson has tracked the story for ten years.
HJ: Employees of the CDC would make jokes about this disease. If anyone
ever said something like, gee I'm tired, they would be teased about having
this fake, bogus disease.
NS: In May 1986 the Centers for Disease Control released this report
[Morbidity & Mortality weekly Report, May 30, 1986] on the investigation of
the Tahoe outbreak. [A string of newspaper headlines flash by: "Health
officials dismiss mysterious disease at Incline" "Stealthy Epidemic of
Exhaustion--Doctors are perplexed by the mysterious 'yuppie disease'"
"Fatigue: Chronic Fatigue Syndrome prevalent in several Tahoe communities"]
PC: The overall message, the tone of the paper, was that this was, this did
not appear to be anything at all.
NS: To Cheney and his supporters it was a major blow. Even the name the
government gave the disease, Chronic Fatigue Syndrome, was belittling.
HJ: It makes it sound like a benign condition. It doesn't sound catching;
after all, you can't catch yuppie burnout. This is not a disease about
being tired; this is a very serious brain illness. It's an epidemic hiding
in plain sight.
NS: And it wasn't just in Lake Tahoe. Over 2,000 miles away in the small
rural town of Lyndonville, New York, Dr. David Bell was dealing with his own
David Bell: It appeared that this was some type of a viral infection that
was going through town.
NS: And in Lyndonville, that illness seemed to be targeting the young. All
four of Jean and Paul Pollard's daughters got sick.
Paul Pollard: I felt helpless and it was difficult to see them suffer, and
they suffered a lot.
NS: With more than 50 patients ill and no answers, Dr. Bell reached out to
the CDC for support, hoping he wouldn't have to battle the illness alone.
DB: I was under the impression that this was the only place in the country
where this illness was occurring.
NS: The CDC never helped, and they never told him about Lake Tahoe. But in
1987 doctors from around the country met at a medical conference in
Portland, Oregon, to discuss the disease. It was there that Dr. Bell met
Dr. Cheney and they decided to join forces to look for the virus that they
believed was attacking their patients' immune systems in the hopes that
FINALLY the CDC would believe them. But it was still an uphill battle.
Back then, the press was reporting that patients were infected with an
already familiar virus. [ABC's Nightline clip: ABC medical reporter Dr. Tim
Johnson saying, Chronic Epstein-Barr Virus Syndrome..] [Newspaper
headlines: "Tired all the time--Doctors study Chronic Fatigue and its link
to the Epstein-Barr virus" "Malaise of the '80s--the puzzling and
debilitating Epstein-Barr virus" "Basic symptoms may be sign of sign of
Epstein-Barr virus"] Epstein Barr was eventually ruled out, but the
government's favorite explanation for the disease, that a cause was in the
mind, remained. The National Institutes of Health lead researcher appeared
on Nightline: [Steven Straus, NIH] "From my own research I know this
disorder is so subjective that patients will commonly feel better no matter
what you give them."
Physicians everywhere followed the government's lead. And patients
like 13-year-old Skye Dailor in Rochester, New York, would go from doctor to
doctor, only to be told it was all in her head.
Mrs. Dailor: They were convinced she was crazy. They said, she just
doesn't want to go to school, there's nothing wrong with this girl.
NS: The kids at school made it worse for Skye. Many teased her and refused
to believe she was sick. Some even ostracized her, saying she had AIDS,
refusing to sit with her in the cafeteria. Finally, her mother found David
Mrs. Dailor: I can't even tell you how we felt; it was, you mean we're not
NS: Meanwhile, in 1988, Cheney had another lead--Elaine DeFreitas, a bright
young scientist studying the link between multiple sclerosis and an immune
system virus. Because MS had some symptoms in common with Chronic Fatigue
Syndrome, DeFreitas agreed to test some of David Bell's patients, including
13-year-old Skye, for the viruses she was working with.
Elaine DeFreitas: And to my surprise a number of these patients were
positive. I didn't KNOW what it meant. But, we felt that we had to pursue
it further and if the data held up, we had a responsibility to tell the
scientific community what we found.
NS: What she found was the first evidence that the patients might be
infected with a new immune system virus. DeFreitas' findings were something
to tell the world about but on the night she, Bell and Cheney were leaving
for a meeting in Japan [The CFIDS Chronicle, Special Issue, Research
Breakthrough! picturing Cheney, Bell and DeFreitas] to announce the
discovery, David Bell was paged in the airport. It was an emergency room
doctor in Rochester, New York who was trying to resuscitate Skye Dailor.
That day, a classmate of Skye's had cruelly suggested she go home and kill
herself. David Bell listened over the phone as 14-year-old Skye died from
an overdose of pills. [Skye's grave: Skye Kristina Dailor, January 28,
1976 - September 1, 1990]
Mrs. Dailor: She died for no reason. No one should have to suffer that
NS: It was too late to help Skye, but Cheney and Bell thought the CDC would
be interested in DeFreitas' major discovery. Once again, they were wrong.
[Newspaper Headlines: "Virus found that may be linked to a debilitating
fatigue ailment" "Does a retrovirus explain fatigue syndrome puzzle?"
"Chronic fatigue linked to Virus" "Viral clues found in 'yuppie flu'"]
HJ: Even though this was in every major paper, headlines all over the
world, NO comment from the federal government--absolute dead silence.
NS: Eventually, the CDC wrote a paper dismissing DeFreitas' findings
[Investigation of retroviral involvement in chronic fatigue syndrome]. But
she pushed on, finally isolating a new virus, seen here for the first time,
which she believes may be one of the causes of Chronic Fatigue Syndrome. It
is a virus that attacks the immune system and can lay dormant for years.
But DeFreitas says the government has ignored her discovery.
We asked to speak with the Centers for Disease Control and the National
Institutes of Health about Chronic Fatigue Syndrome but they refused.
Instead, Dr. William Reeves, the man in charge of investigating chronic
fatigue for the CDC, told us over the phone that (1) there IS no viral cause
for this problem, (2) there are no immune symptom abnormalities in patients
with chronic fatigue, and (3) there are no clusters. So when asked about
the illness at Lake Tahoe, he said that was hysteria.
EDF: If they admit to a cluster, then they MUST say it's infectious and I
don't think the CDC wants Chronic Fatigue Syndrome to be considered infectious.
NS: The government finally did put someone forward to talk to us--Dr.
Philip Lee, Assistant Secretary of Health. [Snyderman interviewing Lee]:
Do you believe in clusters?
PL: Do we have clusters of cases? Oh yes, I do.
NS: Dr. Reeves told the producer for this piece that in fact the Lake Tahoe
"cluster" didn't exist and the people living there are hysterical.
PL: Well again, that's his view.
NS: But he's a scientist at the CDC; he's responsible for investigating
these kinds of things!
PL: The CDC did investigate that. They reached certain conCLUsions, which
many people disagree with.
NS: Do you believe it's a virus?
PL: I really don't know, I mean..
NS: If you had to take..
PL: Well I would guess..
NS: an academic hunch..
PL: Well I would say it would be a retrovirus or a virus, I would think so.
NS: Lee says the government is making progress. But Hillary Johnson, whose
book is being released today, remains unconvinced.
HJ: I think it's one of the most incredible medical stories of our century
and it's going to be very, very hard for the government to change its
position on this disease. I mean to have to sort of call up the American
public and say, hey, you know that disease that we've been calling chronic
fatigue syndrome for the last ten years, well guess what, it's really
something far more serious and it's transmissible and we made a mistake in
Tahoe and we've been making a mistake ever since.
Sam Donaldson: The debate inside the government continues about what causes
Chronic Fatigue Syndrome and about whether it's contagious. There is no
treatment for the disease itself; doctors can treat only the symptoms that
patients continue to suffer.