Hillary Johnson in Osler's Web does an excellent job of documenting how chronic fatigue syndrome (CFS) is an extremely disabling illness. For example, on page 364 of Osler's Web, she reports that Dr. Philip Peterson, an infectious disease specialist, sought to assess how bad of a disease was CFS. A majority of Dr. Peterson's patients had been highly active, even athletic women in their thirties when they fell ill. Dr. Peterson states: "Once they developed chronic fatigue syndrome, roughly half of our patients could walk no more than three blocks...Running was out for all the patients, but for most, even minor exercise, like walking uphill, was difficult...It does appear to be a chronic illness that does not resolve, as least as we've seen it."

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.

Chapter 33 is entitled "HIV Negative AIDS" (see photo below). If everyone in the world just focused on this one horrific fact, it would bring history-altering change to millions of suffering patients. "Truth to Power" by Charles Ortleb is another great read regarding the history of CFS. Hilary Johnson, the author of Osler's Web, wrote a review for Truth To Power and its printed on the book's dust jacket (its available on Amazon). Or simply google "NON HIV AIDS"

If you have Chronic Fatigue Syndrome, this book will make you MAD, but it will also validate you. Hillary Johnson has done an excellent job of investigative reporting from across America over a 10 year period of time, to disclose the governmental conspiracy to sweep CFS under the rug. Because I have CFS and my cognitive skills are greatly declined, I had to use a dictionary with this notable piece of literature, but it was worth it. I started it in the Spring and I have 2 chapters to go. I can't wait to finish it.

Since I am a ''victim'' of this hideous affliction, I didn't think anyone would 'get it right'. Hillary Johnson tells the real story. Excellent research...and empathy. Kudos, Ms. Johnson!

This is by far my favorite book of all time!

Thank you, Hillary Johnson, for taking on the monumental task of documenting the egregious crimes against us ME/NEID (Myalgic Encephalomyelitis/ NeuroEndocrine Immune Disease) (aka "CFS"/CFIDS) sufferers by Stephen Strauss and others at NIH and CDC. I was on the edge of my seat even on my fourth reading of this true crime thriller! Your heart will be pumping with adrenaline and outrage as you race through yet another "Oh My God!" moment where another damning piece of evidence is laid bare. As a trial lawyer myself, I've never seen such a riveting and clear case made out of such complicated facts.

Alot of progress has been made since the book came out- basically CDC and others finally admitting much of what Johnson said in the book. I still wonder about some of the things for which Johnson made a great case, but have essentially been forgotten. For example, it seems clear to me that the human retrovirus discovered by Dr. Elaine Defritas is a cause of ME, but it hasn't been discussed in the literature in more than a decade. Ampligen is finally nearing approval; I wonder if it is the wonder drug portrayed in the book. And I continue to see reports in the media of more ME patients dying of previously extraordinarily rare cancers such as Burkitt's Lymphoma, but this continues to be ignored by the scientific journals.

All people with ME and their families would benefit enormously from reading Osler's Web. Osler's Web made me feel the catharsis that a disbelieved rape victim must feel when a skilled prosecuter, in open court, makes it clear beyond a shadow of a doubt that the defendant did in fact rape her; that she is not a liar, but instead a victim of a terrible crime.

Outstanding! This is not a breezy read but if you want to know everything about Chronic Fatigue, the doctors who try to help their patients and the government bureaucracies that do everything in their power (or maybe they are just that incompetent) to block the science behind this very real disease then you can't go wrong with this book. The investigative journalist Hillary Johnson did a thorough and fantastic job of investigating every nuance of the discovery, the science and the fight for recognition of CFIDS.

There are so many statistical references that even though there may be helpful information it is difficult to get past without jumbling all the info. Did not finish book. Avid reader but this is a hard read.

This is a good book that discusses the start of the ME/CFS (Chronic Fatigue Syndrome) epidemic, and about a great ME/CFS Specialist and what he had to deal with in the community where it started.