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Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome
 
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Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome [Hardcover]

Dorothy Wall , Nancy Klimas

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More than 800,000 in the U.S. may suffer from chronic fatigue immune dysfunction syndrome--CFS. Bad enough, Wall says, that they suffer in isolation, often without medical intervention; worse, many with symptoms go undiagnosed. They are frequently dismissed as "mental" by people who expect that everyone always recovers from a bout of flu, which is what CFS initially resembles, complete with sore throat, head- and muscle ache, and fatigue. With CFS, however, those symptoms escalate for weeks, months, and years. The CFS sufferer becomes increasingly debilitated, incapable of carrying out the most mundane tasks, often bedridden for weeks at a time. It's one thing if people are unsympathetic, but because there is no definitive test to reveal a specific cause, and no renegade germ to blame, physicians have been slow to recognize CFS. Yet it has been around as a subset of symptoms since the early 1980s, maybe longer. Wall doesn't demonize the medical establishment but does disdain practitioners who write CFS off as "yuppie flu," and leave sufferers feeling isolated and medically invisible. Donna Chavez
Copyright © American Library Association. All rights reserved

Book Description

"An important investigation of a little-understood illness with much to teach doctors and patients alike. General readers will find her personal story compelling as well as beautifully told."â€"Lynne Sharon Schwartz, author of The Fatigue Artist

"Carefully researched and documented, Encounters with the Invisible takes the reader on a sweeping journey of a life, although the story rarely leaves Ms. Wall's bedroom."â€"K. Kimberly McCleary, President, Chronic Fatigue and Immune Dysfunction Syndrome Association of America

Blending personal drama with literary reflection, reportage, and medical history, Dorothy Wall illuminates the conflicts and controversies surrounding Chronic Fatigue Syndrome and graphically depicts the way a virus resculpts a life.


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Most Helpful Customer Reviews on Amazon.com (beta)
Amazon.com: 4.9 out of 5 stars (15 customer reviews)

34 of 34 people found the following review helpful
5.0 out of 5 stars An excellent description, May 17 2007
By K. Campbell - Published on Amazon.com
This review is from: Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Hardcover)
I was diagnosed with post-viral CFS in 1988. This book is an excellent description of living with CFS except for one thing: 3/4 of marriages affected by chronic illness break up, which means that most of us don't have the live-in support system she had.

Some disbelieving doctors like to attribute CFS to "secondary gain" or enablers who allow the patient to "enjoy the sick role". Unfortunately, for many CFS patients, there's no enabler and the only thing you gain is the stress of trying to make ends meet with no income.

Wall tells of having someone run her bath, gently wash her, dress her, and help her back to bed. That's a luxury most of us don't enjoy. If I'm not well enough to cook, I don't get dinner; if I cannot safely get in and out of the tub by myself, I don't bathe (on a cold winter day when I needed a bath to warm up, I got stuck in the tub for over an hour because I lacked the strength to boost myself up and out, and there was no one to call for help).

Wall's live-in support structure allowed her to do what those of us who live alone can't: use all her energy to write a book to explain to the rest of the world what it's like to be trapped in a body and brain that don't function.

I recommend this not only to patients, but to their friends and family as one of the best patient-written books I've read.

34 of 35 people found the following review helpful
5.0 out of 5 stars Becoming Visible, Oct 14 2006
By Cort R. Johnson - Published on Amazon.com
This review is from: Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Hardcover)
I have read many books on CFS but none has moved me more deeply in more different ways than this book has. One of the above reviewers was correct; this book is a classic, probably the first literary classic of CFS. Ms Walls, a professional writer, brings all her skills to bear in describing in poignant terms the losses, frustrations and triumphs she has encountered in her several decade long experience with this disease. There is something here for everyone; besides her story the author focuses chapters on the disease's history, it's name, the ongoing research, what it tells us about the pitfalls of modern medicine and more. What I enjoyed most about this book was her fine tuned sensibility and her poetic grasp of language. She proved to be an excellant guide through the issues that the CFS patient faces in our world today. We are lucky to have this book.

21 of 21 people found the following review helpful
5.0 out of 5 stars Fantastic!, Dec 12 2005
By D. Fiorito - Published on Amazon.com
This review is from: Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Hardcover)
This book is superbly written, and seamlessly joins the author's own stuggle with CFIDS with an account of the history and politics of the illness. A must-read for every patient and his/her family.
 Go to Amazon.com to see all 15 reviews  4.9 out of 5 stars 

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