Download the free Kindle app and start reading Kindle books instantly on your smartphone, tablet, or computer - no Kindle device required. Learn more
Read instantly on your browser with Kindle Cloud Reader.
Using your mobile phone camera - scan the code below and download the Kindle app.
Follow the Authors
OK
Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic Paperback – June 8, 2006
| Hillary Johnson (Author) Find all the books, read about the author, and more. See search results for this author |
Kirkus Reviews
- Print length736 pages
- LanguageEnglish
- PublisherBackinprint.com
- Publication dateJune 8, 2006
- Dimensions5.98 x 1.63 x 9.02 inches
- ISBN-100595348742
- ISBN-13978-0595348749
The Amazon Book Review
Book recommendations, author interviews, editors' picks, and more. Read it now.
Customers who viewed this item also viewed
What other items do customers buy after viewing this item?
Editorial Reviews
About the Author
Product details
- Publisher : Backinprint.com; 0 edition (June 8, 2006)
- Language : English
- Paperback : 736 pages
- ISBN-10 : 0595348742
- ISBN-13 : 978-0595348749
- Item Weight : 2.6 pounds
- Dimensions : 5.98 x 1.63 x 9.02 inches
- Best Sellers Rank: #3,702,979 in Books (See Top 100 in Books)
- #2,128 in Immune Systems (Books)
- #3,495 in Pain Management (Books)
- #14,626 in Medical Diseases (Books)
- Customer Reviews:
About the authors

Discover more of the author’s books, see similar authors, read author blogs and more

"
Hillary Johnson has been a staff reporter or contributor to numerous newspapers, including Women's Wear Daily, The Wall Street Journal, the Christian Science Monitor and Minneapolis Tribune. She was a news reporter at "Life" magazine for four years and a contributing editor at "Rolling Stone" magazine for a decade. Writing primarily for magazines, she was also a frequent contributor to Vanity Fair, Vogue, Town & Country, W, Harper's Bazaar, US, In Style, Self, Working Woman, Mirabella, Elle, New York Magazine and the British Tatler, Her reporting has taken her from Love Canal in New York State to the U.S. Virgin Islands, Paris and St. Moritz, Switzerland for Town & Country. While at Life, she profiled Halston, Walter Cronkite, Jane Fonda and Jerry Falwell, Sr. She has interviewed presidential campaign frontrunners, writers like E.B. White and Gore Vidal, and movie stars like Cybil Shepherd, Kim Basinger, the sixteen-year-old Molly Ringwald and Laura Dern for Rolling Stone.
Her 1987 series about what was then called chronic Epstein-Barr virus disease, or "CEBV," commissioned by Rolling Stone, was a finalist in the reporting category at the 1988 National Magazine Awards. Afterward, she began a nine-year reporting odyssey that resulted in her critically acclaimed book, "Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic."
Kirkus Reviews called "Osler's Web" a "...relentless, meticulous and highly persuasive expose." Publisher's Weekly gave "Osler's Web" a starred review and devoted an article to the author's arduous reporting effort. The Boston Globe described "Osler's Web" as "...a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research." The San Francisco Chronicle called the book a "...major documentary account of (ME), marked by human tragedy and quite obvious government shortcomings."
"Osler's Web" continues to be the definitive history of the pandemic of myalgic encephalomyelitis (a.k.a. "chronic fatigue syndrome") that began in the early 1980s.
"Reimagining Ruth" is the story of Johnson's passionate effort to reconnect with her artist mother after a long absence when she learns her mother is fatally ill. "At a time when memoir follows memoir in an onslaught of self-absorption, [Reimagining Ruth] is doubly significant," reviewer Floyd Skloot of the Portland Oregonian wrote of Johnson's story. "Not only is this a terrific book, it also reminds us of what the memoir form can offer."
Originally published by St. Martin's Press, a literary jury for the New Yorker magazine named "Reimagining Ruth" among the top-ten non-fiction books of the year.
Johnson has released a newly expanded and updated version of "Reimagining Ruth" in digital format. The new Kindle edition contains over 70 images of Ruth Jones's art and photographs from the author's childhood.
"'Osler's Web' was an incredibly complex story," Johnson says today. "I was dealing with a cast of hundreds, few of whom knew one another, and out of that I needed to fashion a coherent narrative. My reporting and writing effort took years. In contrast, when I sat down to write 'Reimagining Ruth,' the words seemed to pour onto the page. The effort took just six months. A few people have suggested to me it's the better book."
Johnson's most recent book, "The Why: The Historic ME/CFS Call to Arms" had its origins in a speech she was invited to give in London in 2009. That speech, prepared for a European audience, was a passionate account of the American Centers for Disease Control's shoddy, even criminal response to ME when the disease emerged in pandemic form in the early 1980s. Johnson, unconstrained by time here, enlarges her scope and delivers a scathing assessment of the CDC in a compact (92 pp.) paperback. Her anecdotes about the way CDC staff viewed the disease and its sufferers in the 1980s and well into the 1990s alone are worth the read. Those who read "The Why" likely will come away with with the unassailable impression that CDC has not only impeded scientific progress but has harmed ME sufferers in myriad ways.
Johnson graduated Phi Beta Kappa from the University of California at Berkeley with a degree in journalism, and received a masters degree from Columbia University’s Graduate School of Journalism. She is a native of Minneapolis and lives in Upstate New York.
Customer reviews
Customer Reviews, including Product Star Ratings help customers to learn more about the product and decide whether it is the right product for them.
To calculate the overall star rating and percentage breakdown by star, we don’t use a simple average. Instead, our system considers things like how recent a review is and if the reviewer bought the item on Amazon. It also analyzed reviews to verify trustworthiness.
Learn more how customers reviews work on AmazonReviewed in the United States on September 13, 2017
-
Top reviews
Top reviews from the United States
There was a problem filtering reviews right now. Please try again later.
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.
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:
-----
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.
M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.
The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.
Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.
The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.
Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.
The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.
Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.
The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.
The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.
-----
M.E. is not the same thing as CFS or CFIDS or 'ME/CFS' but this book is a M.E. book in most of the descriptions of the disease, absolutely. We do know that M.E. is not caused by a retrovirus but an enterovirus with a 4 - 7 day incubation period however. For political information on M.E. and why M.E. is not 'CFS' see books and articles by Dr Hyde and Dr Dowsett.
Jodi Bassett, The Hummingbirds' Foundation for M.E.
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.












