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Inside the Labyrinth of the Myalgic Encephalomyelitis Epidemic

 
 
 

"Ms. Johnson’s book describes an important piece of recent medical history that might never have been recorded if it weren’t for her efforts.  Her carefully researched tale leaves us pondering the progress of medicine."

NEW YORK TIMES BOOK REVIEW

 
 

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Osler’s Web is a major documentary account of this strange and still unsolved mystery, marked by human tragedy and quite obvious government shortcomings.
— David Perlman, San Francisco Chronicle
…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.
— Michael Kenney, Boston Globe
I never thought, having lived through the AIDS epidemic, that I’d say this, but the government and the establishment treated these patients worse.
— Michael Denneny (Editor, Osler's Web, And the Band Played On) Publishers Weekly
In a chronology that runs from 1984 to 1994, Johnson crams fact after telling fact, building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to respond to the challenge of a multifaceted disease…
— Kirkus Reviews
Writing with quiet fury, Hillary Johnson builds a devastating picture of the U.S. government research establishment’s decade-long strategy of avoidance and denial. Her epic-length report draws chilling parallels between CFS and AIDS…
— Publishers Weekly
…Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.
— Dave Parks, Birmingham News
The absorbing new book by Hillary Johnson, Osler’s Web (Crown) may do for chronic fatigue syndrome what And the Band Played On did for AIDS: expose the government’s sluggish response to an epidemic (two million). Once dismissed as hypochondria, the disease seems to attack the central nervous and immune systems.
— Mirabella
Osler’s Web is a 700-page document of a mishap of truths, and perhaps a watershed of enlightenment into the political, medical and clinical mistreatment of chronic fatigue patients over the past 12 years… Fact after fact, quote after telling quote, denial after denial hit us at every flip of a page.
— Mark Gilbert, The Medical Post
…a riveting medical sleuth story in the tradition of Randy Shilts’ And the Band Played On… relentless, powerful, bleakly funny…
— Mindy Kitei, Philadelphia Inquirer
Nine years in the making, Osler’s Web is journalist Hillary Johnson’s opus about the murky origins and alleged government mismanagement of the much maligned Chronic Fatigue Syndrome (CFS). Like a good thriller, the book underscores the truism that nothing grabs a reader’s attention than a good pandemic. Written in chronological order and interspersed with terse, CNN-inspired datelines, Osler’s Web is a scathing chronicle of the post-modern plague years.
— Jill Yesko, Baltimore City Pages
One hard truth is defined Osler’s Web. Patients with Chronic Fatigue Syndrome (a CDC label that undermines the seriousness of the illness) have been abused by a system that values technological documentation over listening to and believing in patients…Any physician daring to look in the mirror should take a stroll through Osler’s Web. It should remind them of the old familiar adage, ‘Physician, heal thyself.’
— Mark Gilbert, The Medical Post
(Johnson’s) sympathies lie with the victims of the syndrome, with the grass roots internists who became convinced they were witnessing the appearance of a reasonably coherent disease and with the relatively few scientists brave enough to run counter to the prevailing nihilism.
— Imogen, Evans, Los Angeles Times
The Uncle Tom’s Cabin of the twentieth century.
— Charles Ortleb, publisher, New York Native
Osler’s Web” should terrify you if you live in America and think at all about your health. Osler’s Web is an enormous book in size and scope. That it sustains both suspense and interest is a genuine accomplishment; that it manages to be both balanced and precise while also discovering a pattern of shocking misconduct makes it thoroughly convincing. This is a sad, outrageous story.
— Floyd Skloot, Sunday Oregonian
…the labyrinth in the subtitle is more likely a reference to the Kafkaesque world of medical politics.
— Kathryn Chase Merrett, Edmonton Journal
Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.
— Sam Husseini, In These Times
When (CDC) epidemiologists Jon Kaplan and Gary Holmes arrived at the resort town on Lake Tahoe they…took no detailed histories. ‘It was either [go gambling] or sit in the motel and watch TV or work on the patients’ charts,’ Holmes recalls in Johnson’s book. Gambling prevailed.
— Mindy Kitei, Phildadelphia Inquirer
Osler’s Web must be the definitive book on a baffling disease many federal health officials have all but dismissed as either a psychiatric ailment or the manifestation of an overactive imagination.
— Barbara Yost, The Arizona Republic
(Johnson’s) extensive research in this nearly 700-page volume offers shocking truths and meticulous fact-finding…her brilliant Osler’s Web is a better thriller than fiction and a serious road map for where we are today in the healthcare crisis. A book likely to shake the core of the Centers for Disease Control and the National Institutes of Health.
— Janet Birchfield, Bookbeat, WQRC
A fascinating read for physicians and the public—not just to understand ME but to get a glimpse into how governments and the medical community handle unknowns. It’s a medical detective story.
— Byron Hyde, MD, Ontario