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Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic 1st Edition

4.8 out of 5 stars 29 customer reviews
ISBN-13: 978-0517703533
ISBN-10: 051770353X
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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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Product Details

  • Hardcover: 720 pages
  • Publisher: Crown; 1 edition (March 12, 1996)
  • Language: English
  • ISBN-10: 051770353X
  • ISBN-13: 978-0517703533
  • Product Dimensions: 2 x 6.8 x 10 inches
  • Shipping Weight: 2.5 pounds
  • Average Customer Review: 4.8 out of 5 stars  See all reviews (29 customer reviews)
  • Amazon Best Sellers Rank: #522,793 in Books (See Top 100 in Books)

Customer Reviews

Top Customer Reviews

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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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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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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By A Customer 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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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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Format: Paperback
OSLER'S WEB is a must read for all the families and friends of people with ME/CFS. We belong to a country that ignored CFS for at least a couple of decades and arguably still does. Some of us belong to family units that ignored us, disowned us, or otherwise failed to support us or the ME/CFS message. Even look at the small number of reviews of this book on amazon.com. We need our family and friends to understand the politics of our illness and help get the ME/CFS message out. Osler's Web is a must read if you are well enough to tackle such a long non-fiction book. Reads like a mystery, and keeps you intrigued until the last page. A fantastic book to fire up your activism urges (that is, if you have any energy at all).

OSLER'S WEB is a critical piece of investigative journalism by Hilary Johnson (who suffers with ME/CFS) and is akin to AND THE BAND PLAYED ON about the AIDS epidemic by Randy Shilts (who died of AIDS). Both books uncover in painstaking detail the appalling medical institutional responses to these illnesses including tracing cases back to "case zero" by the CDC; both books show how both illnesses got swept under the rug and ignored by our medical institutions, how medical institutional responses influenced public support, or lack thereof. Both books cleverly depict in detail, the politics, greed, and prejudice interplaying with science, and entering our medical institutional responses, and even the CDC lying to the American public, and major medical institutes like the Mayo Clinic doing what Johnson calls "wallet biopsies" on patients they charged $10,000 each on tests and procedures they knew to be pointless and then routinely dismissed the patients as hypochondriacs behind closed doors - sometimes rudely to their faces, so strong was the prejudice.
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