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Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic Hardcover – March 12, 1996

ISBN-13: 978-0517703533 ISBN-10: 051770353X Edition: 1st

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Product Details

  • Hardcover: 720 pages
  • Publisher: Crown; 1 edition (March 12, 1996)
  • Language: English
  • ISBN-10: 051770353X
  • ISBN-13: 978-0517703533
  • Product Dimensions: 9.3 x 6.2 x 1.7 inches
  • Shipping Weight: 2.5 pounds
  • Average Customer Review: 4.7 out of 5 stars  See all reviews (27 customer reviews)
  • Amazon Best Sellers Rank: #553,722 in Books (See Top 100 in Books)

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.

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

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Customer Reviews

4.7 out of 5 stars
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This book reads like a mystery, and keeps you intrigued until the last page.
"phoenix43"
Widespread prejudice and dismissal of ME/CFS as trivial or imaginary still exits, even in the medical community and even in our families.
Art1300
I highly recommend this well-researched book to anyone who desires to learn more about CFS.
John Wear

Most Helpful Customer Reviews

37 of 38 people found the following review helpful By N. Hall on April 27, 2000
Format: 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.
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33 of 35 people found the following review helpful By Gail Kansky (gailronda@aol.com on June 11, 1999
Format: 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.
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22 of 22 people found the following review helpful By A Customer on January 5, 1998
Format: 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!
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18 of 19 people found the following review helpful By "phoenix43" on October 17, 2000
Format: Hardcover
The author does an outstanding job of revealing how some of our most "respected" agencies in western medicine attempt to deal with what they can not define, despite what the patient says. Through constant shifts in focus, we are shown how several different groups deal with this syndrome. The writings illicit a tremendous amount of rage at the incompetence, pain at the ignorance, and confusion in the beurocratic anchors. This book reads like a mystery, and keeps you intrigued until the last page. It concludes like the reality of the search for this anomoly- with no 'pat' answers.
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12 of 12 people found the following review helpful By A Customer on July 16, 1996
Format: Hardcover
Don't read anything else until you have read this book. While it was a slow go for someone WITH CFIDS, persistance paid..and it paid big!

Anyone who wants to know the inside track on CFIDS or many other diseases, the government's waste and incompetence, the cost of ego over the health of the individual, the dollars of insurers being more important than those who are suffering and the ignorance in both the private and political sectors despite the sheer mountains of evidence of this horrible & disabling disease...well, it's all here! The book accounts the last 10 years of struggle for the diseased and the few doctors who try to get this disease the respect and attention it deserves. The book is frightening in its revisiting of the disbelief of the polio and multiple sclerosis sufferers of the past, who also fought to have their illnesses taken seriously. CFIDS is the new plague and everyone who wants to know where their tax dollars go for any disease should read this book.
It is eye opening!! Government, the Medical Profession, Insurance companies and the public go on trial in this book. In spite of the persistence of disbelief, those who say it's "all mental" and "just depression" Ms. Johnson triumphs and shows us that our medical community still have a long way to go. A must read for everyone.
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10 of 10 people found the following review helpful By A Customer on June 24, 1996
Format: Hardcover
On the edge of your seat by the second page, this book was a delightful surprise. Anyone who is interested in Chronic Fatigue, the world's health or the rotten things our government can do will thoroughly enjoy this masterful writing by Hillary Johnson. Never has a book yanked my emotions around from one extreme to the other so quickly!! HIGHLY recommended
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25 of 30 people found the following review helpful By Jodi-Hummingbird TOP 1000 REVIEWER on March 6, 2005
Format: Hardcover Verified Purchase
This book gives you an understanding of how and why M.E. has been stigmatized, ridiculed and ignored as much as it has. It makes it very clear that it was not a mistake or an oversight at all but that it was in fact utterly deliberate.

The pure stupidity and lack of basic human compassion involved is astounding. It's important to know how we've ended up in this mess so we can see how we might get ourselves out I think. It's also important that we not underestimate how low these people will go - its lower than you could even imagine.

Whether you have M.E. or one of the many other diseases commonly misdiagnosed as 'CFS' you'll be outraged.

It is also very important to read this book together with information which explains why 'CFS' as a concept must be abandoned and why renaming 'CFS' as M.E. or 'ME/CFS' is not the way forward. Sadly this book leaves a lot to be desired politically and with separating M.E. from 'CFS' - the most basic part of any real advocacy campaign!

You need to also know that:

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M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.
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