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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 pandemic disease that for a quarter century has been called "chronic fatigue syndrome," and has recently been shown to have a strong statistical correlation with infection by the third human retrovirus, a gammaretrovirus called "xenotropic murine leukemia virus-related virus." Experiments conducted by scientists at the Whittemore Peterson Institute in Reno, Nevada, the National Cancer Institute at Fort Detrick, Maryland, and the Cleveland Clinic--where XMRV was discovered four years ago--have demonstrated that 68 of a cohort of 101 patients were infected with XMRV, compared to just eight of 218 controls. The finding in controls suggests that 3.75 percent of the general population (equivalent to approximately ten million Americans) may be XMRV-positive. A chi-square statistical analysis of these data suggests that if you have "cfs" it is virtually impossible that you will not be infected with XMRV. Scientists in several countries and in the U.S. are working to attempt replication of these findings, and to understand the pathogenic potential of XMRV. The work appeared in Science magazine on October 9, 2009. XMRV has also been associated with aggressive prostate cancer. In Japan, one study has indicated that 1.7 percent of the Japanese population is XMRV-positive.
Until recently, "cfs," believed to afflict more than 17 million children and adults worldwide, has received 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 constituted medical fraud, violated the civil rights of sufferers and jeopardized the health of present and future generations. Neglect of this public health crisis by governments has been 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 Osler's Web updates. In addition, I will be posting 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 a companion site for a new 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."
X Files: From the New York Times' Op-ed page, October 20th, 2009; an editorial by Hillary Johnson on the discovery of XMRV and a brief history of "chronic fatigue syndrome" at the Centers for Disease Control:
"...CDC science is not legitimate science. It is the science of defamation, of marginalization, of disenfranchisement..."
From "The Why," a speech in London by Hillary Johnson, May 28, 2009.
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Hillary Johnson extends a warm welcome to Dutch readers:
L.S.,
Ik ben zeer verheugd te kunnen melden dat, dankzij een getalenteerde vertaler uit Nederland, geselecteerde updates van Oslers.Web.com in het Nederlands zullen verschijnen. Momenteel zijn twee vertaalde updates te lezen op de website: ‘Sif-Sac, Wederom’, en ‘Vaarwel Havik’, beide artikelen handelen over de Amerikaanse Centers for Disease Control. Wij hopen dat deze vertalingen het onderling begrip en de communicatie zullen bevorderen tussen de Amerikaanse en Europese ME/cvs gemeenschap.
Graag wil ik u vragen, indien (van toepassing en) mogelijk, bovenstaande info te plaatsen op uw website/facebook pagina of forum.
Met vriendelijke groet,
Hillary Johnson
Auteur van ‘Osler’s Web. Inside the labyrinth of the Chronic Fatigue Syndrome epidemic’.
www.oslersweb.com
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Fun Facts: What They Thought About You
The letter below was displayed on a bulletin board during the late 1980s in the corridor of the division at the Centers for Disease Control that has been responsible for investigating "chronic fatigue syndrome" for the last twenty-five years. It was written by an anonymous CDC scientist. Larry Schonberger, the government epidemiologist who supervised the agency's Lake Tahoe investigation from his office in Atlanta, took it down--reluctantly--after one of his colleagues observed me copying its contents into my notebook. "This will come back to haunt us," the staffer told Schonberger. The actual letter came to me via the Freedom of Information Act.
Hillary Johnson, London 2009
Photography by Regina Clos, copyright (C) All Rights Reserved
Read more about Hillary Johnson, the author of Osler's Web, and her journalism...
Excerpts from reviews of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
"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
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.
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.
Updated anniversary edition of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, available now from online and traditional bookstores
From Osler's Web, page 471-472:
"[Anthony] Fauci wonders why the patients are so upset about being labeled with a psychiatric problem. I remember he said to me, 'Haven't we come far enough along in our society that mental illness needn't carry a stigma?'"
-----James Hill, deputy assistant to Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, when pressed for his boss' scientific view of "CFS." 1991
From Osler's Web, page 490:
"[Hannah] has had many hospital trips where people did not believe her--they thought she was faking. And of all my children, Hannah has had the most trouble with issues of identity and depression. She would say, 'I don't see myself in the future.' But all my children have been deeply affected by chronic illness. It wasn't just Hannah. Throughout their adolescence, they had no sense of their future. They couldn't say, 'What will I be doing in ten years?' They didn't have that luxury. It was just, 'Let's survive today.' With the exception of Alison, none of them have a memory of ever feeling well."
-----Jean Pollard in 1991, all of whose children fell in during the Lyndonville, New York epidemic of 1984-1985.
From Osler's Web, page 491:
"Despite your attempts to persuade her otherwise [the difficult patient] may continue to insist she has CFS. She may become the sort the British call heartsink patients--those who exasperate, defeat and overwhelm their doctors by their behavior."
-----From the May 30, 1989 issue of Patient Care, a journal distributed to 115,000 clinicians. The authors: Dedra Buchwald, University of Washington; Nelson Gantz, M.D., Boston; Wayne Katon, University of Washington psychiatrist; Peter Manu, University of Connecticut.
From Osler's Web, page 530:
"There's obviously a lot of politics involved in this. Lots of people are under pressure from different sources to solve this thing one way or another, and many people seem to have a vested interest in either finding a retrovirus or not finding a retrovirus...We have no political ax to grind. We're working at a university. No one says to me, "It would be better if you did find a virus or didn't.'"
----John Gow, microbiologist, University of Glasgow, in 1991, immediately after a lengthy private meeting with Tom Folks, the Centers for Disease Control's microbiologist charged with attempting replication of Elaine DeFreitas's discovery of novel virus fragments in "CFS" patients.
From Osler's Web, page 159:
Like every other skeptical clinician, I tried hard not to believe in it, but I kept doing my wierd immunologic panels on these patients. The immunology is not your run-of-the-mill immunology, nor is it depression immunology, another area I was rather interested in. I had a fairly good idea of what depression did to the immune system. In fact, I was an investigator in the Center for Psychoneuroimmunologic Research in HIV infections, so I had a good background in the literature on immunologic and neuropsychiatric connections. That's really what got me into it. Actually, I said, 'Boy, this is different.' It didn't take long--not more than three months after I became a believer--to have word of mouth spread around that I was a chronic fatigue clinician. After that, I was just overwhelmed with patients from the south Florida area and from far away, too."
-----Nancy Klimas, University of Miami, 1986
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Photography by Regina Clos, (C) Copyright, 2009
Hillary Johnson addressed the 4th IiME International ME/CFS Biomedical Conference 2009 in London on May 28th. To learn more about Invest in M.E., its scientific presenters for its upcoming international conference on May 25th, 2010, and to order a conference DVD, see Invest in M.E.'s conference website.
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Dutch Translation, SIF-SAC, WEDEROM
SIF-SAC, WEDEROM
Update: The SIF-SAC COMMITTEE MEETS IN WASHINGTON, DC
Dutch Translation, VAARWEL HAVIK
VAARWEL HAVIK
An Update on the Departure of William Reeves from the Centers for Disease Control
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