SIF-SAC, WEDEROM
FOR DUTCH SPEAKERS, A TRANSLATION
VAARWEL HAVIK
Introductie: op 14 februari 2010 werd William Reeves, hoofd van het onderzoek naar ‘cvs’/ME binnen de Amerikaanse Centers for Disease Control, door zijn superieuren van zijn post verwijderd. Dit gebeurde iets meer dan drie maanden na de bekendmaking dat meer dan twee derde van een cohort van 101 ‘cvs’-patiënten geďnfecteerd bleek met het XMRV- retrovirus. Reeves had direct na de publicatie van deze vondst tegenover de New York Times verklaard dat hij betwijfelde of zijn bureau in staat zou zijn de vondst te repliceren. Tot dusver – het is inmiddels zes maanden later – bewaart het bureau het stilzwijgen over deze replicatiepoging.
Hier volgt een evaluatie van Reeves’ geschiedenis binnen het bureau, en van de weigering van de kant van de CDC, vijfentwintig jaar lang, om deskundig klinisch advies met betrekking tot de ziekte aan te nemen.
"A Case of Chronic Denial"
Hillary Johnson's October 20th, 2009 op-ed piece for the
New York Times, "A Case of Chronic Denial." A brief history of the Centers for Disease Control's mishandling of the CFS epidemic.
The Why...A speech in London
A speech in London on May 28th, 2009 at the pre-conference dinner for Invest in M.E.'s international medical conference.
Copyright Permissions
Standards and Requirements for Quoting from Osler's Web
Killer Flu
In 1998, Hillary Johnson wrote about the ever-mutating influenza virus and the ever-present potential for another 1918-style pandemic in an article for
Rolling Stone. In May, 2009, with deaths mounting in New York City and elsewhere around the world from the new flu strain, H1N1, RollingStone.com re-published the story.
Film Rights to Osler's Web
"Two doctors in Incline Village, two investigators from Atlanta. For the moment, it was just a rift among four troubled doctors in rural Nevada..."
Hillary Johnson's Foreward to Cure Unknown: Inside the Lyme Epidemic
"In 1993, journalist Pamela Weintraub and her husband thought they were doing themselves and their two sons a favor by escaping from Queens to the sylvan New York suburb of Chappaqua, a town so famously bucolic Bill and Hillary Clinton made it their outpost after decampting from the White House...."
Weintraub asked Hillary Johnson to write the foreward to Weintraub's definitive exploration of the politics and science swirling around the chronic Lyme epidemic. Johnson inveighs against a medical system that disappears diseases afflicting millions--and explains how it happens.
Discover magazine editor Pam Weintraub interviews Hillary Johnson about the Centers for Disease Control's latest research effort.
Disordered Patients or Disordered Science? When the CDC claimed that people with "CFS" have a higher incidence of childhood trauma than healthy controls, they studiously ignored a 2001 study that proved exactly the opposite. One skeptical journalist,
Discover magazine's Pam Weintraub, questioned the validity of the CDC's study. Read her January 13, 2009 inverview with Hillary Johnson.
"Methods" from Osler's Web
Hundreds of interviews, correspondence with doctors and patients, medical journal articles, and inquiries to numerous federal agencies using the Freedom of Information Act were all methods Hillary Johnson utilized over the nine-year period she reported
Osler's Web. Read a description of these methods, excerpted directly from the book's introduction.
"Roll Call"
During the years she worked on her book, Johnson met hundreds of patients. Just before publishing
Osler's Web in the spring of 1996, the author spoke for the last time to 48 of the patients whose stories she recounted in her book. "Roll Call" was a final accounting of their status. This unusual entry appears here in full.
"Crown's Chronic Fatigue Saga"
Three publishers, two editors, one agent, myriad attorneys, twelve maxed-out credit cards and nine years or 3,285 "dark nights of the soul" after Johnson signed a book contract, the first edition of
Osler's Web was shipped to bookstores.
Publisher's Weekly, the acknowledged "bible" of the publishing industry, chronicled the highs and lows of the evolution from idea to 726-page book upon the debut of
Osler's Web in the non-fiction marketplace.
PW's Margaret Sanborn wrote, "After nine years of work, Johnson has finally come in from the cold."
Heroes and Villains
In the course of reporting
Osler's Web, author Hillary Johnson occasionally snapped photographs of the many people who figured prominently in the story she wrote.
"Garbage In, Garbage Out"
Jocelyn Kaiser, writing in
Science magazine (July 19, 2006) explored the Centers for Disease Control's gene studies with a critical eye in "Biomedicine: Genes and Chronic Fatigue." Read Hillary Johnson's on-line response.
Elle Magazine interviews Hillary Johnson about Osler's Web
Elle magazine's Neal Karlen interviewed Hillary Johnson about revelations in
Osler's Web just prior to the book's publication in March 1996. Johnson responded to queries ranging from why CFS was considered a disease of women to why the Centers for Disease Control and the National Institutes of Health refused to recognize the disease as an organic illness.
Essay, "My Mother's Legacy"
"It's never too late to understand a parent's subtle, individual spirit. Discovering the serious artist behind her late mother's wry prints led the author to a new level of the "conversation" they shared life-long--and longer."
From
Victoria magazine, August 1999
Excerpt from My Mother Ruth
"The most complex relationship--mother and daughter--is exposed to intense revelation in this beautifuly written and emotionally compelling account of how two women get to look beyond the role of mother and daughter and see two complex individuals who are given a final chance to truly know each other under the pressure of impending death..."
Cat in August
My Mother Ruth: A Memoir of Love, Loss and Art
A daughter learns of her mother's terminal cancer diagnosis...
When Hillary Johnson learned that her mother, Ruth, had fatal cancer, she left New York City and returned to Minneapolis to care for Ruth in her final years...(eventually discovering) what she had failed to see in the two decades since she had left home for college: her mother's identity as a woman, independent of the role of mother or wife.
Reviews and comments about My Mother Ruth
"A fine example of the memoir as an act of discovery--intimate in the best sense."
--Sunday Oregonian
"The most complex relationship--mother and daughter--is exposed to intense revelation in this tragic, but satisfying work of love and friendship--A beautifully written and emotionally compelling account of how two women get to look beyond the role of mother and daughter and see two complex individuals--under the pressure of impending death."
--St. Martin's Press
"A remarkable account of death by cancer as it affects mother and daughter. What makes this book so gripping is the subtlety 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
