|
Alert: The website editor is mortified to report that the "contact" page for this website failed to pass on messages posted to the OslersWeb.com. contact page until very recently. Frustratingly, there is apparently no way to retrieve these messages. Internet technology is marvelous--but only when it works. The glitch has been fixed. If you can reconstruct your message, please resubmit any notes or comments you may have e-mailed to the "contact" page. In the meantime, please accept our sincere apologies to all who took the time to write to the site. The contact page is working now and will transmit your e-mail.
HILLARY JOHNSON, AUTHOR OF OSLER'S WEB
welcomes you--patients, doctors, scientists and all who are interested in matters of bio-politics and medical ethics--to OslersWeb.com, a site dedicated to the epidemic disease myalgic encephalomyelitis, or M.E.
Myalgic encephalomyelitis is a devastating and so-far incurable disease that is believed to afflict more than 20 million children and adults worldwide, yet receives little or no biomedical research funding from federal health agencies in the U.S., the United Kingdom and other developed countries. I believe the two-decades-long refusal of government agencies to investigate this disease, prevent its spread and ensure scientifically-based care for patients constitutes medical fraud, violates the civil rights of sufferers and jeopardizes the health of present and future generations. Neglect of this public health crisis by governments is morally indefensible.
Please feel free to explore this many-layered site, which currently includes excerpts from my books, reviewers' comments, essays, interviews, a page for discussion and a blog. In addition, I will regularly post a selection of never before seen and historically significant government documents from my research cache gathered over the nine years I reported Osler's Web.
I hope you will stop by often.
- OslersWeb.com is being introduced in tandem with a new and updated edition of my 1996 book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. A decade ago, Osler's Web was described by one reviewer as "a relentless, meticulous and highly persuasive expose by a journalist who spent nine years investigating the medical research establishment's failure to take seriously chronic fatigue syndrome." In the new update, "Ten Years Later," I discuss why the disease continues to be ignored or dismissed as unimportant by the medical profession and why patients continue to be disenfranchised, twenty-five years after a world outbreak of this disabling disease.
- My 1999 book, My Mother Ruth: A Memoir of Love, Loss and Art, has been newly released, as well. I have included several of the original reviews of this memoir along with an excerpt from it on OslersWeb.com. Although My Mother Ruth is a stylistic departure from the journalism in Osler's Web, some who visit this site may find the art and memories in this book meaningful and diverting. Named one of the ten best non-fiction books of 1999 by the New Yorker magazine when it was originally published, My Mother Ruth has been called "exceptionally moving" and "intimate in the best sense."
- I invite you to read my foreward to Pamela Weintraub's new book, Cure Unknown: Inside the Lyme Epidemic. In it, I discuss the reasons why several important diseases have been dismissed as imginary by powerful political and financial interests.
- If you are interested in learning more about the story reported in the classic book Osler's Web, look at the Features page to find magazine articles about it, exceprts from Osler's Web, photographs of some of the major players in the story, and more.
 Hillary Johnson Read more about Hillary Johnson, the author of Osler's Web, and her journalism...
Curious about the cover art
on the new edition of Osler's Web?
Learn about Anita Kunz, the Canadian magazine illustrator
who created a brilliant visual metaphor
for sudden onset M.E. in 1987 for Rolling Stone magazine...(below) Toronto illustrator Anita Kunz's image of a woman being invaded by twin serpents is featured on the cover of the new edition of Osler's Web, gratis the artist.
Kunz was commissioned by editors at Rolling Stone magazine in 1987 to illustrate Hillary Johnson's two-part series, "Journey Into Fear," a front line report that described the emergence of M.E. in the United States in the middle 1980s. After reading Johnson's manuscript, Kunz painted this unforgettable, powerfully intuitive portrait. Her illustration was featured as a two-page spread in the magazine.
To learn more about the artistry of Anita Kunz, whose work regularly appears on the covers of Time, Newsweek, The New Yorker and other magazines, and who was named one of Canada's fifty most influential women, visit her on-line gallery. If you fell ill with "chronic fatigue syndrome" or myalgic encephalomyelitis after 1996, you may have missed an important book, Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.
Called "groundbreaking," "compelling," a "watershed of enlightenment," and a "medical thriller" by reviewers when it was published in 1996, Osler's Web was the first exploration of the ME/CFS pandemic by an investigative journalist. Osler's Web has been newly reissued with an update by the author and is available from online and traditional bookstores.
If you have wondered why there are currently few effective medical therapies for your illness, or why its cause remains unknown, read this book. If you have felt bewilderment when you encountered skepticism from family, friends, employers and doctors after falling ill, Osler's Web will help you understand how the skeptic's view was nurtured by federal health bureaucrats and allowed to become the status quo.
Osler's Web will introduce you to the men and women who first recognized this disease in their medical clinics and, eventually, described the disease in medical journal articles in the middle and late 1980s. You will meet, as well, the scientists and bureaucrats inside the Centers for Disease Control and the National Institutes of Health who attempted to squelch research throughout the 1980s and 1990s, and scientists in elite private institutions who made important discoveries that were buried under a blizzard of propaganda. You will hear the voices of people who fell ill--children and adults--and the voices of their doctors, who struggled to help them.
Veteran reporter Hillary Johnson, who was a contributing editor at Rolling Stone magazine at the time, interviewed more than 500 scientists, doctors and public health officials over the course of nine years to complete Osler's Web. She undertook scrupulous research, traveling to three continents and most major American cities to report on the stunning melt-down that occurred in the scientific and medical communities in the face of this now-widespread disease.
If you are curious about the history of this disease, and are seeking insight into why--twenty-five years after it first emerged as a public health crisis--ME/CFS continues to be controversial, read the new edition of Osler's Web
Please explore this site to read reviewers' comments about Osler's Web and to learn more about its author.
Excerpts from reviews of Osler's Web
"A major documentary account of this strange and still unsolved mystery." --San Francisco Chronicle
"At nine years in the writing, it is a compelling, valuable story that takes the reader into the often petty, back-stabbing world of high-stakes medical research...In the space of any half-dozen pages, the story will move from doctors' offices in the small towns that were the locations of major outbreaks of CFS, to a research laboratory in Philadelphia, to the corridors of the Centers for Disease Control in Atlanta..." --Michael Kenney, The Boston Globe
"Ms. Johnson's book describes an important piece of recent medical history that might never have been recorded if it weren't for her efforts. Her carefully researched tale leaves us pondering the progress of medicine." --Philip J. Hilts, New York Times
"Writing with quiet fury, [Johnson] builds a devastating picture of the U.S. government research establishment's decade-long strategy of avoidence and denial--groundbreaking, compelling."Publishers Weekly
"A riveting medical sleuth story in the tradition of Randy Shilt's The Band Played On..."
Mindy Kitei, Philadelphia Inquirer
"Osler's Web is an enormous book in size and scope...This is a sad, outrageous story."
Floyd Skloot, Portland Oregonian
"...[A] 700-page document of a mishap of truths, and perhaps a watershed of enlightenment into the political, medical and clinical mistreatment of Chronic Fatigue Syndrome patients over the last 12 years...Fact after fact, quote after quote, denial after denial hit us at every flip of a page..."
Mark Gilbert, The Medical Post, Toronto
|
|
|
