OSLERSWEB.COM

Osler's Web was published on April 15, 1996. Coverage of the book's publication began with a lengthy piece on ABC's Prime Time Live, followed by appearances by the author on Good Morning America, CNN and Crossfire. Johnson undertook a twenty-four-city book tour. She was interviewed by the hosts of myriad radio and televison shows and by reporters from most major newspapers. Newsweek devoted a page to Osler's Web and its author, and USA Today featured Johnson on its front page. Rolling Stone magazine excerpted a lengthy portion of Osler's Web in March 1996.


Osler's Web was a selection of the Book of the Month Club and the Quality Paperback Book Club.

The book reviews (below) are excerpted from numerous newspaper and magazine reviews published that spring.

"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

"A relentless, meticulous, and highly persuasive expose by a journalist who spent nine years investigating the medical research estasblishment's failure to take seriously chronic fatigue syndrome...A compelling, well-documented account, certain to be compared to Randy Shilt's And the Band Played On."

--Kirkus Reviews

"Writing with quiet fury, (Johnson) builds a devastating picture of the U.S. government research establishment's decade-long strategy of avoidance and denial--groundbreaking, compelling."

--Publishers Weekly

"Osler's Web should terrify you if you live in America and think at all about your health. The book is a carefully researched, detailed study of bio-politics and the systematic governmental and institutional refusal to face a new epidemic disease, chronic fatigue syndrome. Exploring 'what could well be among the most shameful chapters in medical history,' it chronicles a failure to respond to a public health threat affecting between a half million and two million Americans...Osler's Web is an enormous book in size and scope...This is a sad, outrageous story."

--Floyd Skloot, Portland Oregonian

"A riveting medical sleuth story in the tradition of Randy Shilt's The Band Played On...That Johnson's relentless, powerful, bleakly funny book reads like Shilt's treatise on the checkered governmental response to AIDS is no coincidence--they had the same editor."

--Mindy Kitei, Philadelphia Inquirer

"Osler's Web is a stirring narrative, rich with heroes, villains, and dramatic stories of individual sufferers: a professional football player, now housebound, surviving on worker's compensation; a computer programmer whose IQ dropped from 130 to 85; a family who sold off the kids' musical instruments because they would likely never be able to play them again. In one outbreak in a school in Lyndonville, N.Y., children have been ill so long they no longer remember what life was like before the illness..."

--Sam Hussseini, In These Times

"Osler's Web is 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...Johnson, a journalist, writes in the style of an investigative detective, with diary-like precision. In this way she weaves a meta-tale, researching the research, eveloping us in her own literary web as she dances back and forth chronologically between geographical locations--locations where scientists, clincians, administators and politicians carried out their turf war over the proprietorship of CFS."

--Mark Gilbert, The Medical Post, Toronto

"The absorbing new book by Hillary Johnson, Osler's Web (Crown), may do for chronic fatigue syndrome what And the Band Played On did for AIDS: expose the government's sluggish response to an epidemic (two million sufferers). Once dismissed as hypochondria, the disease seems to attack the central nervous and immune systems."

Mirabella

"Osler's Web is no dispassionate account of chronic fatigue syndrome...(Johnson's) sympathies lie with the victims of the syndrome, with the grass roots internists who became convinced that they were witnessing the appearance of a reasonably coherent disease and with the relatively few scientists brave enough to run counter to the prevailing nihilism."

--Imogen Evans, exectuive editor of the Lancet, Los Angeles Times Sunday Book Review

"A recent book--Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic--recounts the history of this controversial ailment...Along the way, [Johnson] criticizes health officials for dismissing the syndrome as psychological and notes that CFS is not the first condition to be overlooked--in the early part of this century, for instance, multiple sclerosis was known as "the faker's disease."

--Sasha Nemechek, Scientific American

"Osler's Web must be the definitive book on a baffling disease many federal health officials have all but dismissed as either a psychiatric ailment or the manifestation of an overactive imagination..."

--Barbara Yost, Arizona Republic

"A fascinating read for physicians and the public--not just to understand ME but to get a glimpse into how governments and the medical community handle unknowns. It's a medical detective story."

--Byron Hyde, MD, editor and author, The Clinical and Scientific Basis of M.E./​CFS, published by the Nightengale Research Foundation, 1992, Ottawa, Canada

"In a masterful effort of investigative reporting, Hillary Johnson reveals for the first time how [a disease] 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...

"Johnson tells the dramatic stories of passionate independent investigators whose lives and careers were irreversibly altered by their efforts to push the discovery process forward in the face of neglect, scientifical bias and outright malfeasance on the part of powerful public health institutions. More poignantly, she illustrates the suffering endured by victims of a poorly understood disease when their doctors invest confidence in medical technology at the expense of listening to the patients.

"Using documents from the Freedom of Information Act and a wide array of first hand sources--hundreds of interviews with scientists, clinicians and public health officials conducted over a period of nine years--Hillary Johnson has written a powerful account of a medical establishment gone awry and a frightening disease gone largely unexamined."

--Crown Publishing Group, a division of Random House, March 1996

Penguin Publishers' 1997 paperback edition and collector's item

FROM THE BACK COVER:

"For more than a decade a devastating disease has been allowed to spread through our country--unchecked, insufficiently researched, and all but ignored, if not denied, by the medical establishment. In many circles this disease, still known as Yuppie Flu, is dismissed as a psychological aberration. For the nearly two million people who have endured its traumatic and very real debilitating physical effects, however, Chronic Fatigue Syndrome is no joke.

Journalist Hillary Johnson delivers a shocking indictment of the medical bureaucracy's unwillingness to protect the public from a disease that attacks 300 out of every 100,000 Americans (fifteen times the rate of the polio epidemic at its height). She explodes every myth about CFS, revealing that its victims represent all income levels and backgrounds, that it may be spread through casual contact, and that less than one-fifth of CFS sufferers ever fully recover. Combining heartbreaking stories of the irreversible effects this disease has had on its victims' lives with profiles of the scientists who have dedicated themselves to finding the cause and a cure, this dramatic chronology of a modern killer offers riveting, indisputable evidence that CFS presents a very real threat and is among the most severe diseases known to man."

My Mother Ruth: A Memoir of Love, Loss and Art was published by St. Martin's Press (NY) in 1999. The original edition was lauded by the New Yorker magazine as one of the ten best non-fiction books of 1999. Out of print for several years, a new edition is now available.

Hillary Johnson and Ruth Jones, December 1993

In 1999, St. Martin's Press published Hillary Johnson's memoir of her iconoclastic mother, the artist Ruth Jones. Johnson moved from her home in New York City to Minneapolis to help her mother in 1989 when Johnson learned her mother was suffering from cancer. Jones died three and one-half years later. In the process, the author discovered a woman who she barely knew. Jones had graduated from college and become a printmaker of great wit and technical skill in the years her daughter had been building her reputation as a journalist in New York; she was no longer the fragile, haunted woman of the writer's childhood memories.

In the final months of her illness, Jones lost the ability to speak and so communicated with her daughter by writing increasingly poignant missives in notebooks. The author drew from these fragments of wisdom and wistfulness for her story, creating a prose portrait of a brilliant woman working hard to die without regrets. My Mother Ruth is a tale of revelation and redemption, unique in the memoir genre particularly for its more than forty illustrations that accompany the text--all of them by the author's mother, Ruth Jones.

Below are excerpts from some of the reviews that appeared when the first edition of My Mother Ruth was published.

Cover art from My Mother Ruth: A Memoir of Love, Loss and Art

"A remarkable account of death by cancer as it affects mother and daughter. What makes the book so gripping is the subletly with which the mother-daughter relationship is described and the drama of their changing and evolving roles. Ruth, the mother, and the daughter, the writer, become in the course of the book remarkable and fully realized characters in their own right, seeming to exist apart from the poignant and predictable course of terminal illness. I read it straight off, and it absorbed me throughout."

--John Bayley, author of Elegy for Iris, and former administrator of the United Kingdom's Booker Prizes

"The title of this variegated narrative hardly does it justice. Though some of the most eloquent passages are about the lingering death of the author's mother, Ruth Jones, from esophageal cancer, it is, just as centrally, the writer's memoir of growing up with the woman she has just seen through her final years of diminishment and loss, and commentary on her mother's art as testimony to her quirky, original, unconstrained, sometimes jaundiced, often hilarious view of the human comedy...

"The theme of forgiveness is only lightly treated, but runs like an undercurrent through the whole memoir as the past is gathered into the present and death reframes a life exuberantly if not always prudently lived. The writer's discomfort with some of her own unpredicatble feelings as she struggles to claim what matters and let the rest go rings true and could be very helpful to any for whom ambivalence is a chiraoscuro surrounding the luminous moments of memory and recognition as a parent dies."

--Marilyn Chandler McEntyre, The Hippocrates Project, New York University School of Medicine

"The book had its inception in the death of Ruth Jones, Hillary's mother (forgive me for using first names, but after spending time with them in this book, I feel as if I know them that way.) But what she celebrates is her mother's life, her spirit, her anima, which Hillary came to know in her mother's final years through her art. 'It was only after Ruth died that I began piecing it all together--my blindness, her artistry, our failure to connect on this signal matter.'

"Edna Ruth Hines Johnson Jones was as complex and complicated a woman as her name. At times, I didn't always like Ruth, the strong-personalitied, outspoken, sometimes coarse, always lively Ruth, but I was always fascinated by her, and by the end of her life and the book I admired and respected her.

"Every daughter has a story to tell about her mother. Hillary Johnson, a journalist and freelance writer, not only has a story but the words to tell it. 'There were a whole lot of little old ladies out there, and then there was Ruth,' she writes...In this work, as in all good writing, the universal is the particular. In the story of Ruth Jones and Hillary Johnson, most of us, I dare say, will see glimpses of our relationships with our own mothers."

--Judith Bromberg, National Catholic Reporter

"Even the closest mother-daughter relationships can unravel and reweave themselves many times over in a lifetime. Johnson's moving tribute to her mother, Ruth Jones, portrays their tenuous struggle, exacerbated by distance and terminal illness. Jones' creativity and openess were evident to all except her journalist daughter, who chose to leave home for school at age 18, never to return until 20 years later, when her mother was dying..Only then did Johnson, herself suffering from a difficult-to-diagnose condition (see Johnson's Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic), and her mother discover the truth about who each woman really was. Remarried for more than 25 years, Jones had become quite an artist in the intervening years, something Johnson never fully or appreciated until the end. This is a story of a woman finding fulfillment outside of motherhood and a daughter discovering the strength and spirit of the mother she never really knew...Highly recommended for all public libraries."

--Bette-Lee Fox, Library Journal

"When her mother Ruth was diagnosed with terminal cancer of the esophagus, Johnson (author Osler's Web and journalist), moved from New York to Minneapolis to be with her, staying until she died four years later. What distinguishes this from other memoirs of caring for a dying parent is Johnson's perceptive rendering of her struggle to reestablish a loving relationship with her charismatic but troubled mother. As a parent, Ruth had been erratic at best, sometimes even destructive to Johnson and her brother. In 1953, when the author was three and her brother six, Ruth abruptly left her husband and took her two children to Paris, placing them on a rustic farm while she joined the literary and artistic circle that included James Baldwin; she also became novelist Frank Yerby's lover. After a year, she and the children returned home; Ruth eventually got a divorce. Although she acknowledges Ruth's flaws (including excessive drinking and smoking), Johnson protrays her in a nonjudgmental manner reminiscent of Mary Karr's depiction of her father in The Liar's Club. When Ruth was 50 and happily married, she enrolled in art school and experienced great joy by creating unusual paintings and drawings, some of which are reproduced in this book. Johnson's writing skill is apparent in both her poignant account of how she witnessed her mother's extreme unhappiness through a child's eyes and in several chilling anecdotes detailing the unnecessary suffering inflicted on her mother by incompetent physicians during the last months of her life. B&W and color illustrations."

--Publishers Weekly

"In 1989, Johnson (Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic)who was working as a writer in New York City, received devastating news: her mother, Ruth, was dying of esophageal cancer. Johnson immediately moved back to Minneapolis, where she spent the next four years reconnecting with the witty, chain-smoking, hard-drinking woman with whom she shared a relationship that was as tempestuous as any love affair...

"Ruth Jones was no June Cleaver. Trapped in an unahppy marriage to Johnson's father, she attempted suicide (then) ran away from home, supposedly leaving behind a note that read, 'Gone to Paris, took the kids.' Johnson interweaves the story of her mother's past with that of her own rebellion--before she attended journalism school and established herself as a writer of note...[this] anguished chronicle of her mother's final days has a raw power that speaks a simple truth: in the end, for most of us, it is the life, not the art, that matters."

--Kirkus Reviews

"Some mememoirs seem written to capitalize on personal suffering. Others seek to impress us with the author's accomplishments and contacts, take us to exotic places we might otherwise never know, or teach us life's hard lessons. Work like this, while sometimes entertaining, fades quickly from a reader's mind.

"A few precious memoirs, however, are written because they must be written. Free of any agenda, they move and remain with us because of their honesty and clarity. They expose flaws and triumphs, revealing truths to the reader at the same time they are discovered by the author.

"Hillary Johnson, a former contributing editor at Rolling Stone, has written a fine example of the memoir as an act of discovery. My Mother Ruth is intimate in the best sense, connecting us with another vulnerable human being rather than brandishing secrets that embarrass us...At a time when memoir follows memoir in an onslaught of self-absorption, the arrival of My Mother Ruth is doubly significant. Not only is this a terrific book, it also reminds us of what the memoir form can offer."

--Floyd Skloot, Sunday Oregonian

"Having read Johnson's earlier book on chronic fatigue syndrome, Osler's Web, I was eager to read her new book. There is an intensity about this one as well...Both of these women risked and risked again to live their own lives...[Johnson] is such an honest writer. Her descriptions of the medical profession are worth the read. I recognize many of them, having taken care of a chronically ill husband. But it is the connection of a mother and daughter that is the power of this telling. It is a must read for mothers and for daughters. Darn well should be required reading for doctors, too!"

--Glenda Martin, Book Women

Read Marilyn Chandler McEntyre's full review.

Hillary Johnson and Ruth Jones, San Francisco, 1971

From My Mother Ruth:

"When I was in my early twenties, many of my contemporaries claimed that feminism had saved their lives. Had they missed out, they said, they would have gone insane, killed themselves, ended up on the street. I believe I felt similarly at the time, although I think now we all would have found a way to live our lives without becoming bag ladies. In my case, feminism was like a tempest that blew the sand off a long-undisturbed memory. It roiled my recollection of the childhood I had spent with Ruth, the lilac-scented, pre-divorce years on Girard Avenue during which she told me again and again that I could be anything I wanted to be for the simple reason that she loved me, and most especially that I was already--though a child--a writer. Feminism returned me to that state of innocence. I discovered that I wanted to do good; I wanted to be a reporter and a debunker. I was, for the first time since those distant, enchanted years, full of hope and heart-pounding ambition."