Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic [Paperback]

Hillary Johnson (Author)

Book Description

Publication Date: February 1, 1997

An informative book provides facts and refutes myths about a disease that affects three hundred out of every hundred thousand Americans, discussing its origins and symptoms as well as presenting personal accounts from those who have or had suffered from CFS. Reprint. PW.

Editorial Reviews

From Publishers Weekly

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 text refers to an out of print or unavailable edition of this title.

From Booklist

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 --This text refers to an out of print or unavailable edition of this title.

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Product Details

• Paperback: 736 pages
• Publisher: Penguin (Non-Classics) (February 1, 1997)
• Language: English
• ISBN-10: 0140263470
• ISBN-13: 978-0140263473
• Product Dimensions: 9 x 6.2 x 1.1 inches
• Shipping Weight: 1.8 pounds
• Average Customer Review: 4.7 out of 5 stars  See all reviews (16 customer reviews)
• Amazon Best Sellers Rank: #2,607,929 in Books (See Top 100 in Books)

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Customer Reviews

Most Helpful Customer Reviews

32 of 33 people found the following review helpful:

5.0 out of 5 stars Can't Wait for the Sequal, April 27, 2000

By 

N. Hall (Wauwatosa, Wisconsin United States) - See all my reviews
(REAL NAME)   

This review is from: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Hardcover)

This chronicle of the history of CFIDS is fascinating. There are are better books about what CFIDS is, what it's like to live with it, and what to do about it. The strength of Osler's Web lies in what Johnson has to say about the politics of disease and science. As the wife of a scientist and the daughter of another (and a PWC), I found her highly detailed description of the scientific community to be sadly credible. A lot has happened with regard to CFIDS research since the book was published and I'd love to see an update. What does Johnson make of recent scandals at the CDC, for example, or what does she know about the projects being funded through the NIH? This is good, basic reading for anyone interested in CFIDS and in the dynamics of scientific inquiry.

29 of 31 people found the following review helpful:

5.0 out of 5 stars Should be mandatory reading!, June 11, 1999

By 

Gail Kansky ([e-mail] (United States) - See all my reviews

This review is from: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Paperback)

This masterful book should be mandatory reading for every doctor and patient. The National CFIDS Foundation, Inc. recommends it to this day. It is unequaled for its accuracy and both those in the medical profession as well as patients will have a better understanding of this ill-named disease.

19 of 19 people found the following review helpful:

5.0 out of 5 stars Excellent review of this perplexing and important disease, January 5, 1998

By A Customer

This review is from: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Paperback)

Hillary Johnson does a masterful job of documenting the illness and its history at a level understandable by the lay public, yet it is detailed enough to satisfy the medical audience. This book is a meticulously researched and exposes some of the worst science has to offer and the best in patients and medical researchers. As an epidemiologist, I knew little about CFIDS before reading this book. After reading it, I am truly amazed (yet again) at how politics can corrupt and intrude into the scientific process. I highly recommend this book!