Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic - Hardcover

Johnson, Hillary

Hardcover

ISBN 10: 051770353X ISBN 13: 9780517703533

Publisher: Crown, 1996

Synopsis

In a masterful effort of investigative reporting, freelance journalist Hillary Johnson reveals for the first time how Chronic Fatigue Syndrome was allowed to grow over the course of a decade into a major public health threat under the disbelieving and ultimately blind eye of the American medical research establishment.

About this title

About the Author

Journalist Hillary Johnson has explored the introduction of antiretroviral "cocktails" in AIDS; the use of depleted uranium weapons in the Gulf wars; public health threats posed by the ever-mutating influenza virus; viral causes of multiple sclerosis; air pollution-induced mortality; and health effects of the toxic waste site Love Canal in Niagara Falls, N.Y. Her science reporting has appeared in Rolling Stone, where she was a contributing editor for a decade, Mirabella, Life, Self, the New York Times, Working Woman, Discover and more.

Her two-part series on what was being called "chronic Epstein-Barr viral syndrome" appeared in Rolling Stone in the summer of 1987, generating more reader mail than at any other time in Rolling Stone's history, and was a finalist in the reporting category at the National Magazine Awards of 1988.

Soon after, Johnson began a nine-year reporting odyssey that took her to every major U.S. city, Rome, and Kyoto, resulting in "Oslers' Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic." (The disease is now more appropriately called "myalgic encephalomeylitis.") Her next book, Reimagining Ruth, was a biography of her mother, the artist Ruth Jones, and was illustrated by numerous pieces of her mother's whimsical art. It was selected by a New Yorker magazine jury as among the top ten non-fiction books of 1999 and has recently been expanded, updated by the author and reissued as a Kindle book with additional art and photographs.

Johnson worked as a news reporter at the Minneapolis Tribune, Congressional Quarterly and Fairchild Publications before becoming a staff writer at Women's Wear Daily and W in New York. She was a news reporter at Life magazine and a contributor to national publications, including The Wall Street Journal, Vogue, Town & Country, Vanity Fair, the British Tatler and New York magazine. 

From the Inside Flap

In 1985 in Incline Village on Lake Tahoe, Nevada, two physicians began noticing an unusually devastating illness with an array of symptoms never seen before. Puzzlement at the first few cases turned into alarm when more and more patients staggered in with the same debilitating symptoms. Called variously the Lake Tahoe Disease, Chronic Epstein-Barr Virus Syndrome, Yuppie Flu, and finally Chronic Fatigue Syndrome, this new illness was also being noticed in Brigham and Women's Hospital in Boston, in various hospitals in Los Angeles and San Francisco, and in small towns in upstate New York as well as at other points around the United States. The majority of early cases reported in the press afflicted middle-class, middle-aged women. Unable to find any one cause for this bewildering array of symptoms, the medical establishment attempted to convince these women it was all in their heads.

As time passed, it became clear that sufferers of Chronic Fatigue Syndrome did not have false symptoms and were, in fact, very ill. Nevertheless, the National Institutes of Health and the Centers for Disease Control, having established their position early on that this was a psychosomatic disorder, refused to budge, ignored the epidemic and those afflicted with it, and continually fell short in their efforts to diagnose, treat, and search for a cure. It is now estimated that between 1 and 1/2 and 2 million Americans are suffering from this extraordinarily debilitating disease, with disastrous consequences to their personal and professional lives. It has become clear that it is a disease that attacks the immune system and the brain, and after a decade, it appears that less than a fifth of CFS sufferers ever fully recover from the illness.

Osler's Web tells the in-depth story of this epidemic--the personalities, the politics, the scientific breakthroughs, and the extraordinary failure of our institutions (mainly the NIH and the CDC) to protect the public health. A remarkable example of first-hand, shoe-leather investigative reporting, Osler's Web can be put alongside And the Band Played On as one of the great works of journalism of the last decade or so. Like Randy Shilts's book, it is an epic tale that reads like a novel as we follow this ominous and mysterious afflicting spreading throughout the country.

Reviews

By bringing chronic fatigue syndrome (CFS) out of the shadows and squarely onto the nation's health agenda, Johnson's groundbreaking, compelling report does for it what Randy Shilts's And the Band Played On did for the AIDS epidemic. Once derisively dismissed as "yuppie flu," CFS was recognized as a legitimate, cohesive disease entity by the Centers for Disease Control only in 1990, six years after the first mass outbreaks. An infectious immune disorder that affects millions worldwide (the exact pathogen is unknown), CFS causes debilitating exhaustion, severe aching and headaches and fever, and in many cases affects the brain, causing memory and cognitive impairment, seizures and brain lesions. Freelance journalist Johnson (herself a CFS sufferer in the mid-1980s) interviewed hundreds of patients, scientists, doctors and government officials. Writing with quiet fury, she 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: desperate CFS patients organize support groups, underground clinics, activist coalitions; trials of Ampligen, a promising drug, are halted by the FDA; patients lose medical insurance simply for being diagnosed with CFS-a policy that continues to the present among major carriers. Author tour. (Mar.) FYI: The title refers to Canadian physician Sir William Osler (1849-1919), who exhorted his medical students to be on guard against lockstep thinking. See Book News (Dec. 4) for the story behind the book.
Copyright 1996 Reed Business Information, Inc.

This oddly titled book contains a vast amount of material on a questionable disease that swept across the country during the past decade. Johnson draws on many interviews and professional meetings to document clinical and research work on chronic fatigue syndrome (CFS), and she knows well the medical and popular literature on and the media's dealings with her passionately disputed topic. Incline Village, Nevada, physicians Paul Cheney and Dan Peterson first identified CFS and treated hundreds of patients. Johnson documents the sneering opposition of both the Centers for Disease Control and the National Institutes of Health to recognizing CFS as a genuine disease, the hands-off attitude toward it of several leading medical journals, and the obloquy many physicians heaped on it. Neither Cheney, Peterson, nor any other clinician or researcher could ever absolutely identify the cause of the syndrome, and many in the opposition firmly believed it to be a product of psychiatric disturbances. Johnson's exhaustive volume is a benchmark in the strange history of an even stranger illness. William Beatty

Edition details

• Publisher: Crown
• Publication date: 1996
• Language: English
• ISBN 10: 051770353X
• ISBN 13: 9780517703533
• Binding: Hardcover
• Edition number: 1
• Number of pages: 720