Customer Reviews

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

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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. The strength of Osler's Web lies in what Johnson has to say about the politics of disease and science. As the wife of a scientist and the daughter of another (and a PWC), I found her highly detailed description of the scientific community to be sadly credible. A lot has happened with regard to CFIDS research since the book was published and I'd love to see an update. What does Johnson make of recent scandals at the CDC, for example, or what does she know about the projects being funded through the NIH? This is good, basic reading for anyone interested in CFIDS and in the dynamics of scientific inquiry.

This masterful book should be mandatory reading for every doctor and patient. The National CFIDS Foundation, Inc. recommends it to this day. It is unequaled for its accuracy and both those in the medical profession as well as patients will have a better understanding of this ill-named 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 audience. This book is a meticulously researched and exposes some of the worst science has to offer and the best in patients and medical researchers. As an epidemiologist, I knew little about CFIDS before reading this book. After reading it, I am truly amazed (yet again) at how politics can corrupt and intrude into the scientific process. I highly recommend this book!

This book really gives you an understanding of how and why M.E. has been stigmatized, ridiculed and ignored as much as it has. It makes it very clear that it was not a mistake or an oversight at all but that it was in fact utterly deliberate.

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.

This is a must read if you are well enough to tackle such a long non-fiction book, it'll just blow your mind and really fire you up about how badly we have all been treated historically and the...well you'd have to call them evil, people behind it all. 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.

You need to also know that:

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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.


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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.

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.

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! Anyone who wants to know the inside track on CFIDS or many other diseases, the government's waste and incompetence, the cost of ego over the health of the individual, the dollars of insurers being more important than those who are suffering and the ignorance in both the private and political sectors despite the sheer mountains of evidence of this horrible & disabling disease...well, it's all here! The book accounts the last 10 years of struggle for the diseased and the few doctors who try to get this disease the respect and attention it deserves. The book is frightening in its revisiting of the disbelief of the polio and multiple sclerosis sufferers of the past, who also fought to have their illnesses taken seriously. CFIDS is the new plague and everyone who wants to know where their tax dollars go for any disease should read this book. It is eye opening!! Government, the Medical Profession, Insurance companies and the public go on trial in this book. In spite of the persistence of disbelief, those who say it's "all mental" and "just depression" Ms. Johnson triumphs and shows us that our medical community still have a long way to go. A must read for everyone.

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 government can do will thoroughly enjoy this masterful writing by Hillary Johnson. Never has a book yanked my emotions around from one extreme to the other so quickly!! HIGHLY recommended

I read this book when it first came out. I would highly recommend it to any health care professional, any sufferer, or any relative of any sufferer. Society has come a long way over the years. Around 1990 I took a copy of one Dr. Jay Goldstein's books on chronic fatigue to a lecture on another subject. One of the other attendees picked it up, read the title, and disdainfully tossed in back on the table declaring, "Chronic fatigue? There is no such thing. It's only depression." On the other hand, myths are still all too common.

Back to this book. It leaves me dumbfounded how many of the issues clearly dealt with in this book are still reported incorrectly. Example: Epstein-Barr virus. It has widely been reported that since EB virus does not appear in clusters/epidemics, and that antibodies are present in a very high percent of the population, attributing chronic-fatigue to and EBV outbreak is, well, wrong. And that the doctor(s) should have known that.

However, in the book is it made clear that the doctors at Incline Village where an outbreak occured did know that. So when one of the doctors started seeing many of his patient's showing up with positive blood tests for EBV, he sent some samples to a researcher. The researcher found an antibody pattern that was not indicative of new infections, but rather of a recurrence or reactivation of a prior infection. This was a pattern the researcher had never seen before, and implied another cause, possible a weakening of the immune system. But not an epidemic of new EBV cases. By the way, that also argues against the assertion some have made that EBV is a possible cause, although it should be ruled out clinically.

The book is replete with many stories and issues, that differ remarkably from what is commonly reported about this issue.

One final chilling note. In the book dozens sufferers are introduced, some in depth, some obliquely. In an annex at the end of the book, the is a short follow up on many of the sufferers. What is chilling is how many have died.

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 has helped a lot CFIDS is too unknown - thanks for helping us fight against ignorance, Hillary! The only thing I want to comment on - We don't know if it is a contagious disease. And to say it is, makes some people stay away from us instead of supporting us. Yes, there have been some outbreaks, but it has not been scientifically proven to be contagious!

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 (patients who lose their fingerprints). It makes us sad sad sad (patients who are "no longer at home in the world") but also shows how incredibly strong and resourceful humans can be. Some doctors did care. Some doctors do care. A full explanation of what was once derisively named "yuppie flu" -- provides explanations of the destruction of our lives