Category Archives: Literature

In The Midst Of Hillary Johnson’s Great ME/CFS Mission: “Osler’s Web”

 

I am in the middle of reading “Osler’s Web,” by Hillary Johnson, and to date, finished only 360 pages out of 700.  So many times, while reading very disturbing passages (most are disturbing), I gasp out loud at the lies, lies and more lies and the disgusting actions (or non-actions) or disinterest of CDC employees. The refusal by just about all government employees to accept the well documented research (funded by private patients and families because no money came from government) by excellent and talented researchers and clinicians is mind boggling and discouraging.

I could go on and on, but the frustration I feel and also the anger about the disgusting and CRIMINAL treatment of all patients and their advocates, is overwhelming.  In order to read this book, one must have a strong survivor’s state of mind, because it is not an easy read by any standard; however, Ms. Johnson’s reporting is very well done.  She is constantly citing well documented events, dates, comments and quotes from an enormous list of involved patients and researchers.

I push on because I feel a strong desire and yes, obligation, to find out why the illness that my daughter and many millions like her in the U.S. and many more millions worldwide suffer from, is so wrongly treated and so woefully perfunctorily by the world’s medical community and also governments.

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Sir William Osler (perhaps his greatest contribution to medicine was to insist that students learned from seeing, and talking to, patients and the establishment of the medical residency) is Ms. Johnson’s inspiration for the name of her mission.  I call it a mission because that is exactly what she undertook – a very great mission – to expose the REAL story of the “why” of the disdain that ME sufferers experience around the world, and not being believed that they are REALLY SICK.

OSLER’S WEB by Hillary Johnson is a true documentary of the history – it really is a web – of the malevolent treatment by the US government against EXTREMELY ILL people. It is not an easy book to read, for sure. Not only for the content, but also the fact that it is a large, high paperback with small type and 700 pages. I persevere, and will finish it without doubt. It is RECOMMENDED very highly to anyone who wants the TRUE STORY of why this disease is not taken seriously by our government and most of the medical community.

Dr. Stephen Straus is the worst culprit, in my opinion.  He was the one NIH (National Institutes of Health) scientist (?) who prevented all true and correct information about CFS from getting out to Congress or to the public or to the medical community through publication of excellent research in recognized medical journals.  He would not approve proposals for publication of documented scientific research which he perceived as being against his belief which was that the disease was psychosomatic.  In other words, “It’s all in their heads.”

Straus bet his career on pushing his opinion which was that chronic fatigue syndrome – CFS – (I hate that name – fatigue is definitely NOT the total description of the disease) was not a real disease.  His career was a very successful one because he convinced those all around him that he was right.  He did this by suppressing all the documentation which proved that he was wrong.  He was in full control.

Quote from CFS Centraldotcom:  “For those who don’t know much about the late researcher [Dr. Stephen Straus] who headed up [and held up] “CFS” research for years at the NIH, he holds the distinction as the only physician who seriously injured the health of several patients, during his [antiviral] trial in the 1980s.  (According to what I’ve read in Johnson’s book so far, and after reading articles on the Internet regarding this “physician,” I have arrived at the opinion that this man, single-highhandedly, caused the negativity within which sufferers of ME (myalgic encephalomyelitis) are held in most medical circles.  He is also the reason why no funding, and just a token recently granted, was forthcoming for research since the middle 1980s.

Dr. Nancy Klimas, a Miami Florida immunologist who practiced during the 1980s and still practices, ran a CFS clinic at the University of Miami and an AIDS clinic at the Miami veterans hospital, has stated, “If given a choice of whether to be ill with AIDS or CFS, I would choose AIDS.”  She, more than any member of the medical community, can say this with great authority.  She is an expert in both AIDS research and in CFS research.

Dr. Klimas, during an interview with a CBS reporter, was asked, “Do you think doctors discount females more than they do males?”  Klimas’ answer was swift and sure, “Yes. Oh please, yes. I’m going to say that only because I spent the last 30 years taking care of women that had to go through dozens of doctors to get someone to take them seriously.”  Dr. Klimas made this statement due to the fact that chronic fatigue syndrome (ME – myalgic encephalomyelitis) female patients far, far outnumber male patients.

The big heroes are Dr. Dan Peterson and Dr. Paul Cheney.  They held fast to their knowledge, experience, patient care and test results that their patients and the patients in many clusters around the country were REALLY SICK.

The biggest heroes are the patients who suffer unbelievable trauma every night and day; who have gone through dozens of doctors; who have gone through hundreds of tests; who still suffer intolerable physical and emotional stress every minute of every day; and who have lost their former lives, their friends, families and spouses.

And no end is in sight.  Thirty-plus years have gone by, and we are no closer to one biomarker diagnosis; no closer to effective treatment; and no closer to a cure – if there will ever be one for this multi-symptom disease.

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About Laura Hillenbrand

 

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Some years ago, I happened upon a book entitled, “Seabiscuit.”  It was a fantastic find:  I gorged on every word; not wanting to put it down.  Who was this Laura Hillenbrand?  I had never heard of her, but her name poured out of my mouth every time I was with someone and we got to talking about books and authors.

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And, several years later, the movie appeared.  I had to see it.  I was disappointed.  The story was told in a way that did not project the intimate details that were revealed in Laura’s words.

I lost track of Laura; probably because she didn’t write another book soon after “Seabiscuit” was published.  “Unbroken” was published in 2010.  I was not aware of it; if I were, I would have read it.

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Now, Laura’s second best-seller has been moved to the “big screen.”  And directed by Angelina Jolie.  I will see that movie when it appears in the theaters in just a few days.  There has been so much hype about it.  I plan to read the book, and am expecting to be drawn in to the story of Louie Zamperini, competitive runner, and his experiences during World War II while serving with the United States Army Air Corps.

Laura Hillenbrand has overcome great odds in writing her wonderful nonfiction stories:  She has been a patient suffering with M.E. (Myalgic Encephalomyelitis) for more than 25 years!  Unfortunately, she is mostly housebound and cannot travel; however, she has devised her special ways to write in spite of her illness.

Thanks, Tom Kindlon, for posting the link to the NYTimes-magazine article by Wil S. Hylton, on Google+.  It’s long, but well worth the read.  Laura Hillenbrand is truly an amazing woman!

Henry Miller – The Author Who Changed Pornographic Laws and Saved Freedom of Speech

“If at eighty you’re not a cripple or an invalid, if you have your health, if you still enjoy a good walk, a good meal (with all the trimmings), if you can sleep without first taking a pill, if birds and flowers, mountains and sea still inspire you, you are a most fortunate individual and you should get down on your knees morning and night and thank the good Lord for his savin’ and keepin’ power.”

After reading this portion of a quote by Henry Miller on Brain Pickings, a blog by Maria Popova, I became intrigued enough (after all, I’m not too far from that “magic” number and fortunately still enjoy good health) to search out the author and find out the history of the man.

Henry Valentine Miller (December 26, 1891 – June 7, 1980) was an American writer. He was known for breaking with existing literary forms, developing a new sort of semi-autobiographical novel that blended character study, social criticism, philosophical reflection, explicit language, sex, and always distinctly about, and expressive of, the real-life Henry Miller and yet also fictional. – [paraphrased from Wikipedia]

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Due to charges of being pornographic, all of his novels were originally banned in the United States.  His Tropic of Cancer has been described as “notorious for its candid sexuality” and as responsible for the “free speech that we now take for granted in literature.”  It was first published in 1934 in Paris, France, but this edition was banned in the United States.  Its publication in 1961 in the U.S. led to obscenity trials that tested American laws on pornography in the early 1960s. In 1964, the U.S. Supreme Court declared the book non-obscene.  Tropic of Cancer is widely regarded as an important masterpiece of 20th Century literature.

I never read Tropic of Cancer, or any of Henry Miller’s books, but I’m still not that “intrigued enough” to tackle one right now.  I’ll have to think further about that.

 

[image from Goodreadsdotcom]