*A Chronic Fatigue Cover-Up?*
A New Book Says The Health Establishment Has Ignored An Aids-Like Epidemic,
But It's A Hard Case To Sustain
NEWSWEEK
*From the magazine issue dated Apr 22, 1996*
THE PATIENT, A NORMAL - ly vigorous 36-year-old, shows up in her doctor's
office looking ashen and frail. Her throat hurts, her head and muscles ache
and for several months she has often felt too weak to stand up in the
shower. She can't sleep for more than a few fitful hours at night, and her
mind is a blur. Realizing that she has chronic fatigue syndrome (CFS), the
doctor offers both good news and bad. "The good news is, it won't kill you,=
"
he says. "And the bad news is, it won't kill you."
In her new book, "Osler's Web" (Crown. $30), journalist Hillary Johnson
brings that grim joke very much to life. Through nearly 700 pages of
quick-cut vignettes, the author (herself a sufferer) chronicles the
emergence of this mysterious, nonfatal affliction over the past decade,
while recounting the health establishment's alleged failure to take it
seriously. The book is a prodigious piece of reporting, intended as a sort
of sequel to "And the Band Played On," Randy Shilts's history of AIDS in
America. But CFS isn't AIDS. And while the analogy lends drama to Johnson's
account, it mars the book's credibility.
As the story opens, in 1984, doctors around the country are encountering
patients with chronic, inexplicable flulike ailments. In the resort town of
Incline Village, Nev., Drs. Paul Cheney and Dan Peterson see such an
onslaught of cases that they call on the Centers for Disease Control (CDC)
to investigate. The agency sends out a pair of investigators who quickly
conclude that nothing is seriously amiss. But people keep falling ill. When
tests show that some have developed brain lesions and immunologic problems,
the Nevada doctors suspect an infectious agent is at work. By 1988, Cheney
has joined Dr. David Bell, a pediatrician in upstate New York, and Elaine d=
e
Freitas, a virologist at Philadelphia's Wistar Institute, in a search for a
new virus.
With sporadic funding from patient activists, de Freitas spends five years
pursuing the possibility that CFS involves a previously unknown retrovirus
(the class of virus that includes HIV). She turns up tantalizing signs that
it may, but when the CDC publishes a paper saying it has been unable to
replicate her findings, her support evaporates. By early 1995, the saga has
cost Cheney and Bell their marriages, and a regretful de Freitas fears her
career as a scientist is finished. The book closes with the image of an
infectious disease spreading unchecked as an arrogant medical establishment
looks the other way.
*Yuppie flu:*
It's a chilling idea, but are things really so grim? Few physicians would
now deny that the condition once derided as Yuppie flu is real enough to
ruin people's lives. The CDC has maintained a list of defining symptoms
since 1988, and many medical centers now offer special CFS clinics. No one
knows just how many people are afflicted, or why. Nothing came of the early
suspicion that the Epstein-Barr virus was to blame. De Freitas still
suspects a novel retrovirus and maintains that the government would have
confirmed her findings had it used her methods--but viruses may well prove
irrelevant.
Johnson insists CFS must be contagious because people so often fall ill in
clusters. But when a patients' organization recently asked a group of
experts to weigh that assertion, 12 out of 13 agreed it was premature. "The
current body of scientific evidence argues against the possibility that CFS
is caused by an infectious agent, known or unknown," wrote Dr. William
Reeves, the CDC's current point man. Contagious diseases can usually be
traced from one locale to another through individual contacts. That hasn't
been true of CFS.
Johnson doesn't dwell on treatment in "Osler's Web" (named after a
19th-century physician who stressed the importance of listening to the
patient), but soon after she finished her book, researchers reached what ma=
y
be a turning point. In studying neurally mediated hypotension (NMH)--a
condition in which inadequate upper-body blood pressure causes fainting
spells--scientists at Johns Hopkins noticed that sufferers often experience
periods of CFS-like exhaustion. When the researchers strapped 23 CFS
patients to "tilt tables" to see how prolonged vertical suspension would
affect them, all but one got lightheaded or fainted. And when 19 of them
tried drugs and high-sodium diets to raise their blood pressure, nine
reported "complete or near-complete resolution of all symptoms." Dr. Peter
Rowe, who helped direct the study, says the Hopkins group has been
overwhelmed by desperate patients. "When they get better," he says, "they'r=
e
ready to write us into their wills."
No one knows what proportion of CFS patients suffer from NMH. But Dr.
Stephen Straus, an NIH researcher and one of the villains in the book, is
now working with the Hopkins team. Meanwhile, the federal government is
spending $12 million on other CFS-related research this year, up from
$400,000 in 1988. There's no question the health establishment has erred on
the side of complacency. But it's a stretch to suggest, as Johnson does,
that CFS could "turn out to be among the most shameful chapters in medical
history."
*=A9 1996*
Osler=92s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemi=
c
was written by Hillary Johnson and funded by the Fund for Investigative
Journalism and the CFIDS Foundation in Charlotte (N.C.) Attorney Quinlan J.
Shea Jr., formerly of the National Security Archive, lent his expertise to
obtaining documents through the Freedom of Information Act.
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