Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
Osler’s Web: Surrounded by the Labyrinth of the Chronic Fatigue Syndrome Epidemic Books
Product Description
Tenth year anniversary edition with an update by the author
“A relentless, meticulous, and highly believable exposé by a journalist who spent nine years investigating the medical research establishment’s failure to take sincerely chronic fatigue syndrome… In a chronology that runs from 1984 to 1994, Johnson crams in fact after telling fact, building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to answer to the challenge of a multifaceted disease for which a causative agent has yet to be found… A compelling, well-documented account…” –Kirkus Reviews
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Hillary Johnson’s fascinating book, first touched upon in her article in Rolling Stone is a compelling read. The poor response by the CDC and the NIH to an epidemic that has now affected more lives than both AIDS and Lung Cancer is tragic. Ms. Johnson’s perfectly woven tale (though at times technical) would make for a very tender film in the tradition of And the Band Played On.
Rating: 5 / 5
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 hostile to us ME/NEIDS (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 right 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 fantastic case, but have essentially been forgotten. For example, it seems clear to me that the human retrovirus exposed by Dr. Elaine Defritas is a cause of ME/NEIDS, 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 described in the book. And I continue to see reports in the media of more ME/NEIDS 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/NEIDS 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.
Rating: 5 / 5
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
Rating: 4 / 5
This is the most informative book I’ve read on Chronic Fatigue. The reading is dry at times, but very informative. This book is about the Focal top for Disease Control (CDC) involvement in investigating CFS up to the date when the CDC was found quilty of misappropriation of funding for CFS research. Anyone new to the illness should have this book in their library, even if it is just used for references.
Rating: 4 / 5
I read this book when it first came out. I would highly urge it to any health care professional, any sufferer, or any relative of any sufferer. Society has come a long way over the years. Nearly 1990 I took a copy of one Dr. Jay Goldstein’s books on chronic fatigue to a address on another theme. 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 bestow in a very high percent of the populace, attributing chronic-fatigue to and EBV outbreak is, well, incorrect. And that the doctor(s) should have known that.
But, 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 ongoing 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 hostile to the assertion some have made that EBV is a possible cause, although it should be ruled out clinically.
The book is stuffed with many tales and issues, that differ remarkably from what is commonly reported about this come forth.
One final alarming 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 small follow up on many of the sufferers. What is alarming is how many have died.
Rating: 5 / 5