Tag Archives: Osler’s Web

20th Anniversary Celebration of Osler’s Web

 

This 20th anniversary celebration of Hillary Johnson’s “Osler’s Web,” garnered dozens of media outlets’ coverage and comments by prominent people. Osler’s Web is Johnson’s documentary of the discovery of, and subsequent governmental treatment of, those terribly suffering patients with ME – myalgic encephalomyelitis, a multi-faceted symptom disease (also known as “chronic fatigue syndrome” (CFS) which is a misnomer and mistakenly gives the impression of a simple fatigue – which ME is not!). It is not an easy read but, to read it, will give you a real understanding about this greatly disabling disease and why it is so easily dismissed by those ignorant of, and unwilling to accept, its severity.

The following comment by a spokesman for the CDC (part of the NIH), government agency that is prominently mentioned in Osler’s Web), requires a looksee because it shows the historic illegal, harmful, negative and dismissive attitude of the CDC (Centers for Disease Control and Prevention} :

“Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.”
— Dave Parks, Birmingham News

From the New York Times Book Review:  “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.”

Michael Kenney, Boston Globe:  “…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.”

Sam Husseini, In These Times:  “Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.”

There are many more reviews at “Osler’s Web.”

 

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Osler’s Web by Hillary Johnson

 

Cort Johnson mentioned Osler’s Web in his blog post today, “Health Rising.”

OUT OF PRINT?  I heard about the book many months ago when I read an article by an ME/CFS/SEID advocate; for months, now, Amazon claims it is “Temporarily out of stock.”

osler 1

So, I did the next best thing:  Researched it.  Here’s what I came up with:

“A relentless, meticulous, and highly persuasive exposé by a journalist who spent nine years investigating the medical research establishment’s failure to take seriously chronic fatigue syndrome… In a chronology that runs from 1984 to 1994, Johnson crams in fact after telling fact, building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to respond to the challenge of a multifaceted disease for which a causative agent has yet to be found… A compelling, well-documented account…”
Kirkus Reviews

A reviewer on Amazon (5 stars):
By N. Hall on April 27, 2000

Format: Hardcover

This chronicle of the history of CFIDS is fascinating. There are better books about what CFIDS is, what it’s like to live with it, and what to do about it. The strength of Osler’s Web lies in what Johnson has to say about the politics of disease and science. As the wife of a scientist and the daughter of another (and a PWC), I found her highly detailed description of the scientific community to be sadly credible. A lot has happened with regard to CFIDS research since the book was published and I’d love to see an update. What does Johnson make of recent scandals at the CDC, for example, or what does she know about the projects being funded through the NIH? This is good, basic reading for anyone interested in CFIDS and in the dynamics of scientific inquiry.
If anyone has information about where else, other than Amazon, a copy of this book may be found, please leave the info in comments below.  Thanks.
hillary johnson

Hillary Johnson

I found a page (untitled) with Hillary Johnson being interviewed about her book, but below is only a partial of the interview – it’s too long to post here in its entirely.
At the end of the interview, she has a list of prominent people with the government, research and advocacy, and gives a short statement about them and the reason why she included them:

Hillary Johnson talks about Chronic Fatigue Syndrome and her book, Osler’s Web.  [Ed. Note:  Update – it was published about 20 years ago.]

Is chronic fatigue syndrome (CFS) an illness made up by emotionally troubled people, or is it a legitimate medical illness?

Yes, it is absolutely a legitimate illness. In fact, studies show that CFS is among the most severe of all medical diseases known to man. In the last decade, there have been an abundance of scientific studies that prove CFS carries with it a large range of immunological abnormalities. In addition, scientists have shown that the disease causes significant brain problems, in the form of multiple small anatomical holes in the brain with concurrent I.Q. losses. Cognitive–or thinking–problems, including short- and long-term mem ory loss, inability to perform math calculations and to appropriately “process” visual-spatial relationships are just some of the problems CFS sufferers must cope with on a daily basis. Most recently, in 1995, cardiologists at Johns Hopkins demonstrated that CFS sufferers have a brain defect that results in abnormally low blood pressure and low blood volume throughout their bodies.

Finally, although CFS has been repeatedly dismissed as a “yuppie disease,” some studies show that the hardest hit segments of the population are blue collar workers and the poor. This disease does not respect class lines–everyone is at risk, including teenagers and even very young children.

If CFS is for real, why does it get such a bad rap? Why do people think it’s just a condition of lazy people and malingerers?

The biggest single problem is the name, which not only fails to describe the severity of the disease but which actually inspires hostility toward the sufferer. People with CFS cannot get well merely by getting more sleep, or, conversely, by exercising more. As a matter of fact, telling CFS patients to force themselves to “go out and get the muscles working” is about the worst prescription; vigorous exercise only exacerbates the symptoms.

You say CFS is more serious than the name implies. What do you mean?

“Fatigue” is a most inadequate word in this case. There are elite-class marathon cyclists with this disease who can no longer walk to the corner; there are previously fit adults with CFS who are so weak they must shower while seated on lawn chairs. Many CFS sufferers are confined to wheelchairs, or to their beds. Once caught in the grip of this disease, there are days when brushing your teeth or raising a glass of water to your lips requires effort tantamount to pushing a boulder up a mountain. Most seriously, intellectual abilities are adversely affected. Commonly, the I.Q.s of CFS patients fall, sometimes dramatically. Severely ill CFS patients have all the symptoms of viral encephalopathy, including “ataxia,” which means they cannot walk unaided because their brain and their limbs aren’t communicating.

What have the federal health agencies been doing about this problem?

In 1984-85, a large number of people living in Incline Village, Nevada, were devastated by a mysterious, debilitating disease, now known to be Chronic Fatigue Syndrome. After a cursory investigation of the outbreak, the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) have made little effort to aggressively research the disease. It was not until 1995–ten years later–that scientists at the CDC gave CFS a “Priority 1” listing among their “New and Reemerging Infectious Diseases” category, thus officially recognizing it as a bona fide disease. Despite including CFS in this category, these agencies continue to insist there is no evidence that CFS is infectious.

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