- 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: 4.7 out of 5 stars See all reviews (28 customer reviews)
- Amazon Best Sellers Rank: #933,747 in Books (See Top 100 in Books)
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Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic 1st Edition
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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.
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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Working with a University of Minnesota medical professor, Dr. Peterson and his collaborators employed the Medical Outcome Study to measure physical suffering. A score of 100 was "best health" on the study's scale. Dr. Peterson's team compared their CFS patients' scores with those of healthy people and people suffering from either myocardial infarction (heart attack) or rheumatoid arthritis. Healthy people scored an average of 75. Victims of rheumatoid arthritis scored in the high 40s range; victims of myocardial infarction scored slightly lower. CFS patients in Dr. Peterson's study scored an average of 16. As far as Dr. Peterson and his colleagues knew, such low scores had never been measured on the scale. Dr. Peterson needed to engage an artist to redesign the morbidity graph for the slide he presented at a medical conference, since no other category of patients had ever scored so low.
Dr. Mark Loveless, a Portland infectious disease specialist, frequently administered another test of morbidity, the Karnofsky scale, to both his AIDS patients and his CFS patients. The Karnofsky test, which dated back to the 1940s, was a time-honored measure of a patient's ability to perform common daily activities like bathing and preparing meals. Even in their last week of life, Dr. Loveless had noted, many of his AIDS victims scored higher on the Karnofsky test than did his CFS patients. On page 365 of Osler's Web Dr. Loveless noted in regard to CFS: "This is the most frustrating medical condition I have ever taken care of... It is harder than HIV care, and that just grinds down the best of us."
On page 159 of Osler's Web Johnson reports that Dr. Nancy Klimas, a Miami immunologist, was increasingly impressed by the clinical severity of CFS. Klimas states that "CFS patients were profoundly tired; these aren't normal folks." On page 365 Johnson reports that Dr. Klimas split her time between a CFS clinic at the University of Miami and an AIDS clinic at the Miami veterans hospital. Her young children could tell whether she had spent her day with CFS sufferers simply by reading her face when she walked through the door at night. The children would say "It was a chronic fatigue day, Mommy or it was an AIDS day, Mommy." The children knew the difference, and the difference was that CFS patients were harder for Dr. Klimas to deal with than the AIDS patients.
Hillary Johnson reports on page 273 that Dr. Carol Jessop of San Francisco had 550 CFS patients by the summer of 1988. Speaking to health department officials, Dr Jessop stated: "I have in my ten years in practice seen a lot of things, and I think, besides the AIDS epidemic, this is the most absolutely devastating illness I've ever seen. People have not expired from this disease but have been know to commit suicide. The morbidity is untold. Jobs lost, relationships lost, suicides, and the cost to the health care system. Most of my patients are on disability. It should be called 'chronic devastation syndrome.' "
On page 292 of Osler's Web, Johnson reports that Dr. Carolyn Warner, a neurologist, and Dr. Diane Cookfair, a cancer epidemiologist, made an effort to quantitate the degree of disability in CFS. They administered a standardized measure of morbidity called the Sickness Impact Profile Scale (SIPS) to nearly one hundred CFS sufferers. Dr. Cookfair reported that "People are scoring off the wall on the SIPS. Chronic fatigue syndrome patients test as high or higher than people with cancer and heart attack."
Despite the seriousness of CFS, Hillary Johnson documents that both the Center for Disease Control (CDC) and the National Institute of Health (NIH) were biased against CFS. Dr. Stephen Straus of the NIH in particular went out of his way to minimize the reality of CFS. The result was that CFS did not get the federal funding for research that it desperately needed. While AIDS received many billions of dollars for research, CFS received only token sums for research. Johnson also reports that officials in both the CDC and the NIH even joked about CFS patients on numerous occasions. Both the CDC and NIH refused to recognize that CFS is an extremely serious and disabling disease.
In conclusion, Osler's Web is both an excellent work of firsthand reporting and a well-documented history of the first ten years of the CFS epidemic. I highly recommend this well-researched book to anyone who desires to learn more about CFS.
As an illustration of this, Defreitas became extremely frustrated when scientists with whom she was working within the NIH and CDC, could not replicate the results of her diagnostic test. At the same time, a campaign to damage her reputation, as well as her mentor, Hillary Paproki and the Wistar Institute, itself, had begun - which would ultimately result
in both Paproki and Defreitas being fired.
Not long afterwards, Defrietas would be involved in a serious car accident which resulted in serious injuries to one of her arms. In this reader's opinion, the accident was probably created intentionally in an effort to murder her in a plausibly deniable manner - standard operating procedure for the U..S. Military Intelligence complex.
So why did Dr. Defreitas and her organization become the target of a criminal conspiracy?
In all likelihood, because her diagnostic test would have helped to prove that chronic fatigue syndrome (or whatever they call it nowadays), was a government created biological weapon like Lyme Disease.
Most Recent Customer Reviews
Hillary Johnson is a wonderful writer.Read more
When I first was challenged with Chronic Fatigue and Immune Dysfunction Syndrome, also known as Myalgic Encephalomyelitis,
this book...Read more