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

de Hillary Johnson (Author)
4.8étoiles sur 5  Voir tous les commentaires (10 évaluations de client)

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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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10 évaluations
5 étoiles:
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4 étoiles:
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3 étoiles:    (0)
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4.8étoiles sur 5 (10 évaluations de client)
 
 
 
 
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Commentaires client les plus utiles

 
2 internautes sur 2 ont trouvé ce commentaire utile :
5.0étoiles sur 5 Gripping Tale of Human Nature, Avril 30 2004
Par R. E. Thompson "th0msales" (San Francisco, CA USA) - Voir tous mes commentaires
(REAL NAME)   
This review is from: Oslers Web (Paperback)
My sister gave me this book because I was wondering if I have CFS. In the early pages, the symptoms are described and it became clear that I do not have CFS.

So did I stop reading? I couldn't! What a gripping, pell-mell story, unfolding like a psychological thriller---one contributing scene unveiled at a time, in chronological order, with me on the edge of my seat, turning page after page!

What fascinates me most in life is human nature, especially how we deal with minority opinions in our culture. It takes a very secure person to open up to new ideas that might shake our perceptual foundations---the entire grid of assumptions on which we base our approach to daily life. You know that old saying, "Don't move my water dish!"

Osler's Web is about a developing story that the majority does not want to hear or believe. This sociological majority/minority dynamic that Johnson describes so meticulously in this book, I have seen acted out in a tiny non-profit volunteer organization. I've seen it in religious communities, even in families. Heresy. Orthodoxy. Whose voice gets heard. Whose does not. How we treat the "heretic."

What motivates people to say their truth, to keep trying to get heard, once they've been shouted down and trivialized, marginalized or even demonized for saying something that nobody wants to hear?

I'm not thrilled with the human minority/majority dynamic, but it is ubiquitous. This book would be useful to anybody who feels obliged in any context to say that the emporer has no clothes.

This also is the most gripping drama I have read in years. Highly recommended!

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4.0étoiles sur 5 The Definitive Work on Chronic Fatigue, Mars 6 2003
Par R. Artman "Florida Rebecca" (Middleburg, Florida United States) - Voir tous mes commentaires
(REAL NAME)   
This is the most informative book I've read on Chronic Fatigue. The reading is dry at times, but very informative. This book is about the Center for Disease Control (CDC) involvement in investigating CFS up to the date when the CDC was found quilty of misappropriation of funding for CFS research. Anyone new to the illness should have this book in their library, even if it is just used for references.
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5.0étoiles sur 5 Realistic and Revealing, Oct. 17 2000
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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Commentaires client les plus récents

5.0étoiles sur 5 Can't Wait for the Sequal
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. Read more
Publié le Avril 27 2000 par N. Hall

5.0étoiles sur 5 Should be mandatory reading!
This masterful book should be mandatory reading for every doctor and patient. The National CFIDS Foundation, Inc. recommends it to this day. Read more
Publié le Jui 11 1999 par Gail Kansky (gailronda@aol.com

5.0étoiles sur 5 Excellent review of this perplexing and important disease
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... Read more
Publié le Janv. 5 1998

5.0étoiles sur 5 Osler's Web A Good Portrayal
I found Osler's Web to be a good, well-written portrayal of the disease. I'm a YPWC - Young person with CFIDS, and to lend the book to people to help them understand my illness... Read more
Publié le Sep 27 1996

4.0étoiles sur 5 Things you suspected but couldn't possibly have known
Osler's Web tells us things that maybe we suspected (governmental agencies playing politics with our health and our lives) -- and includes details we would never have heard about... Read more
Publié le Juil 17 1996

5.0étoiles sur 5 A Must read for CFIDS sufferers, friends & family!
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! Read more
Publié le Juil 16 1996

5.0étoiles sur 5 A fast-paced "mystery-like" medical history...amazing!!
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... Read more
Publié le Jui 25 1996

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