Osler's Web - Has Anyone Read It?

Discussion in 'Fibromyalgia Main Forum' started by anakinkaid, Feb 10, 2006.

  1. anakinkaid

    anakinkaid New Member

    I just finishe reading a very interesting book: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. It is written by Hillary Johnson.

    I found this book AMAZING. Without saying more, I would like to know what others think of the book.

    For my money, every CFIDS patient AND doctor/caregiver should read this large book, cover to cover.

    What do you think? Have you read it?

    Hoping for replies - Ana
  2. anakinkaid

    anakinkaid New Member

  3. anakinkaid

    anakinkaid New Member

  4. Jen102

    Jen102 New Member

    I won't get around to reading this one. Can you tell us more? Can you summarize a bit of it? Thanks. Jen102
  5. anakinkaid

    anakinkaid New Member

    This book documents the history of CFS and CFIDS, beginning with the first outbreak in Incline Village Nevada in 1985. Hillary Johnson, a writer whose works include material published in the Congressional Quarterly, Wall Street Journal, New York Magazine and Rolling Stone, relates the struggle between "it's an imagined illness for crazy women" doctors and other doctors & scientists who slowly and steadyly believe the disease is more, much more: a retrovirus that effects the brain and, as a result, so many other areas of the body and assoctive behaviors. In other words, a real disease and a serious one.

    This is a massive and complete summary of the personalities, funding struggles (near wars sometimes it seems) between individuals, clinics, government agencies over money, careers, caring and sharing.

    Get this book - and read it! I was amazed. It is an inside view of a world that involves us all.

    Best Wishes - Ana
  6. urge2soar

    urge2soar New Member

    I've not seen a post specifially for "Osler's Web", and must applaud your efforts to get the word out to all of us. The book was written years ago, yet many do not know of its existence.

    The book is very detailed and reads like a cross between a mystery novel/science fiction/medical report. Due to the length of the book it has taken me very long to get through it. I knew how it would end...we all do, yet the journey is fascinating and alarming.

    It should be required reading for med students and doctors that are treating this elusive disease.

    During the course of reading, I found myself wishing that it were in a larger font with black print as opposed to brown. It would have made for an easier read.

    Anyone that wants to learn about how and why this happened should definitely read "Osler's Web". It will make your jaw drop, eyes widen in surprise at the real story, and educate you and consequently everyone in your life.

    Those with a diagnosis of FM only will also see themselves in the pages.

    Great book! Thanks for the post, Ana.

  7. Rosiebud

    Rosiebud New Member

    read it all.

    I found it all too sad, there was no hope there for me and the part at the end telling what happened to the people with CFIDS / M.E. / CFS, whatever name it goes by, was just too heavy.

    I'm sure it may benefit many people but I need to keep positive and it really brought me down. Having said that it was written awhile ago and this disease is now recognised and attempts are being made to treat it.

  8. Mikie

    Mikie Moderator

    And the detail and history are amazing. It's just a little too much for me. I prefer things in a less detailed format. I know it's hard to do an overview of the history of our illness and the struggles to get funding and research, not to mention all the backstabbing politics inside the scientific/government/medical communities. For those who love delving into small details and history, this book is a gold mine.

    It is an older book, published before some of the later strides in treating CFIDS occured. I would hate to have anyone read it and think our case is hopeless. Far from it. It's just that CFIDS has not exactly been a priority for research and treatment.

    The most cutting-edge treatments are coming from the private sector. Mostly, only those who can afford the expensive clinics are currently getting these treatments. The good news is that they are so generous in sharing what treatments they are receiving with us all here. Several of us have been researching on our own and developing our own treatment regimens.

    The good news is that aggressive treatments, on as many aspects of our illnesses as necessary, seem to be working. No one claims to be cured, but until there is a cure, this aggressive treatment seems to be effecting healing in many of us. Progress is sometimes agonizingly slow, but it sure beats being told that there's nothing that can be done. We now know that isn't true.

    "Osler's Web" is a long, detailed history of the early days of interest in CFIDS following the cluster outbreak in Incline Village, NV. It is an excellent book for those who like step-by-step details. I found it difficult to get through but others tell me they couldn't put it down.

    Love, Mikie
  9. cerise

    cerise New Member

    Yes it is an amazing book. It's interesting to see the organizations that do NOT support this book.

    Check out Hillary Johnson's follow-up to her book. What she discovered 10 years later, is that nothing much has changed.

    As a PWCFS (ME really as the book explains how CDC have it the name CFS in 1988)since 1987, coming from Northern California near Lake Tahoe, I found Osler's Web to be extremely accurate.

    This book is always nearby even reference. As a person battling with SSA (I filed in 1995 & my claim is still pending) I know what it's like to have this DD and dealing with the system.

    Keep recommending and always re-read it too!
  10. anakinkaid

    anakinkaid New Member

    Thanks for all the replies. I'd love to read the second book/related articles. Can you share the title(s)? Thanks in advance.

    I REALLY recommend this book. It IS a big book, but worth the read to see the ends and outs of power, money, good science and well....some other type of science-you decide.

    What I found interesting was all the millions of federal CFS/CFIDS research dollars that seemed to have gone who knows where, but it's all in the book. Amazing.

    Best Wishes,

    [This Message was Edited on 02/11/2006]
  11. sues1

    sues1 New Member

    I have a problem in reading.....yet had no problems reading this book....

    It had my interest. Yes, it tells some worse case senario's, and lot of it is from the beginning of this invisable illness. But take heart as there has been advances in this disease and continues to be really.

    It will shock you, make you angry and maybe even cry, depending on your makeup. But you will learn a lot also.
    It was hard for me to quit reading when I was tired.

    I have it loaned out and it has been passed around to many as I felt I should share it. So I am going to get it back soon so I can read it again.

    I checked Ebay and found really really low prices on Osler's Web......I think I paid $25-$30 for it in 1997, do not remember for sure.....but you can get it for a few dollars on Ebay.....quite a few of them listed.

    If you are new to Ebay....also check shipping and handling, and add to the cost......some are cheaper on what they charges for S&S. I did not look at it this time. Also check and see the type payment they accept...I prefer personal check or money order over PayPal for my own reasons.

    If you want people to respect this disease...leave the book out for them to browse through.....LOL....they will be floored by the info they read.

    [This Message was Edited on 02/11/2006]
  12. sues1

    sues1 New Member

    It must of been 1995 -6 when I bought this book, for it was just out and I see now that is when it was first published.
    From this book:
    Additional Information about Osler's Web
    Portions of this page Copyright 1995 - 2006 Muze Inc. All rights reserved.

    Length: 720 pages
    Height: 10.0 in.
    Width: 6.8 in.
    Thickness: 2.0 in.
    Weight: 37.6 oz.

    Publisher's Note
    In 1985 in Incline Village on Lake Tahoe, Nevada, two physicians began noticing an unusually devastating illness with an array of symptoms never seen before. Puzzlement at the first few cases turned into alarm when more and more patients staggered in with the same debilitating symptoms. Called variously the Lake Tahoe Disease, Chronic Epstein-Barr Virus Syndrome, Yuppie Flu, and finally Chronic Fatigue Syndrome, this new illness was also being noticed in Brigham and Women's Hospital in Boston, in various hospitals in Los Angeles and San Francisco, and in small towns in upstate New York as well as at other points around the United States. The majority of early cases reported in the press afflicted middle-class, middle-aged women. Unable to find any one cause for this bewildering array of symptoms, the medical establishment attempted to convince these women that it was all in their heads. As time passed, it became clear that sufferers of Chronic Fatigue Syndrome did not have false symptoms and were, in fact, very ill. Nevertheless, the National Institutes of Health and the Centers for Disease Control, having established their position early on that this was a psychosomatic disorder, refused to budge, ignored the epidemic and those afflicted with it, and continually fell short in their efforts to diagnose, treat, and search for a cure. It is now estimated that between 1(and one-half) and 2 million Americans are suffering from this extraordinarily debilitating disease, with disastrous consequences to their personal and professional lives. It has become clear that it is a disease that attacks the immune system and the brain, and after a decade, it appears that less than a fifth of CFSsufferers ever fully recover from the illness. Osler's Web tells the in-depth story of this epidemic - the personalities, the politics, the scientific breakthroughs, and the extraordinary failure of our institutions (mainly the NIH and the CDC) to protect the public health. A remarkable example of firsthand, shoe-leather investigative reporting, Osler's Web can be put alongside And the Band Played On as one of the great works of journalism of the last decade or so. Like Randy Shilts's book, it is an epic tale that reads like a novel as we follow this ominous and mysterious affliction spreading throughout the country.
    In a masterful effort of investigative reporting, Hillary Johnson reveals for the first time how Chronic Fatigue Syndrome was allowed to grow over the course of a decade into a major public health threat under the disbelieving and ultimately blind eye of the American medical research establishment.

    Industry reviews
    "Johnson is clearly convinced that Osler's approach, with its emphasis on collection of facts and open-minded watchfulness, would have spared chronic fatigue patients much of the suffering they have endured at the hands of modern-day physicians."
    Los Angeles Times Book Review - Imogen Evans (04/07/1996)

    If you want to read this and it is not at your library....I would check Ebay and also Amazon books (under used books).
    Note that some will be worn, and some like new, but you will be told of the condition of each one.

    I hope this helps someone wanting to read it.
    As someone already wrote........do NOT read this book and think of our problems as hopeless.

    It is NOT hopeless...it would be if we accepted it that way, and did nothing. But we are tougher than that, or we would not be on this board.

    More and more medical folks and the public in general is fully accepting this and more and more research is going on and will continue. We are not alone in this fight!

    This book is more to read on history of it, or that is my thinking. But maybe not for all to read.

    Hugs to all.......and Bless -us all!

    [This Message was Edited on 02/11/2006]
  13. anakinkaid

    anakinkaid New Member

    I really enjoyed this book beause:

    1. It very clearly explains WHY there is so much confusion about this disease, even among profesional medical people.

    2. It praises those individuals who sought to understand both the nature of CFIDS and its dangers.

    3. It bravely sights the names and organizations (large and small) that, well, seemed to take another view of, not only events, but of the disease itself.

    4. Syndome after syndome is cited and explained. (Our illness is NOT a mystery, folks).

    When I put down this book, I made a list of new names to search out on the internet.

    I also called my state senators' 800 phone number. I really suggest you to call your's. Ask HOW your representative is support CFIDS research (your money) and what are their plans to publicaly recognize May 12 as CFIDS Awareness Day.

    This book did NOT depress me. It provided me with outstanding new information. (Yes, it was published in 1996, but I am willing to bet you will be amazed how much of this information is 'new' to you. It was to me and I have researched this illness 'til I'm starecrazy trying to get a handle on all this). Information is power and leads to awareness and change. I may be weak, but I still have a voice, a good strong voice.

    When I finished this book, I hugged it and said loudly "Thank You Hillary Johnson!".


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  14. anakinkaid

    anakinkaid New Member

  15. anakinkaid

    anakinkaid New Member

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