Friday, July 9, 2010

COWARDLY ACTS and EVERYDAY REBELLIONS


The Old Guard versus the Crackbrained 
and big news at the end of this post

“When a true genius appears in this world, you may know him by this sign, that the dunces are all in confederacy against him,” wrote Jonathan Swift in 1706.  With that one sentence, Swift deliciously summed up the abuse the gifted suffer at the hands of the ordinary and provided the prophetic title for John Kennedy Toole’s 1980 best-selling novel, A Confederacy of Dunces.  

That manuscript’s first editor wanted the book reworked to make it more marketable, but after much dickering Toole refused, sank into a warren of depression and paranoia, and committed suicide.  Toole’s tormented mother spent a decade fielding rejection notices from publishers before the book was finally published—and won the Pulitzer Prize.

When 17th century British physician William Harvey argued that the heart was not a spiritual entity but rather just a pump that circulated blood, he was dismissed as “crackbrained.”  Harvey’s theory flew in the face of the 1,400-year-old widely held “fact” that blood originated in the liver, snaked through the heart and drained into the tissues.

Change may be inevitable, but it isn’t measured or fair.  It’s bitter and bloody with the old guard on tenterhooks, fighting to the death to stave off its own obsolescence.  “Unrewarded
genius is almost a proverb,” remarked Calvin Coolidge in 1914.  “Yes,” bemoaned playwright Oscar Wilde, “the public is wonderfully tolerant.  It forgives everything except genius.”

Cowardly acts
Institutions—entrenched in the status quo, jealous guardians of their turf—stomp out creativity and color inside the lines.  The result is that throughout history many brilliant, defiant minds have lived haunted lives of ridicule and disaster, while their sheep-like counterparts prosper.  The abuse the gifted suffer from those who are not is, like all cowardly acts, based on fear.

That is why French chemist Louis Pasteur, who had already created in 1885 the first therapeutic vaccine (for rabies) and who would go on to invent pasteurization and prove that microbes caused infectious disease and fermentation, was nonetheless denied admittance to the prestigious Academy of Sciences, in Paris.  According to biographer Patrice Debré, Pasteur wrote a prophetic letter to his wife about it:  “Everyone knows that I am the valid candidate…. But they are afraid (at least many of them are) of chemistry.  They are saying that chemistry wants to take over everything.”  Pasteur was not surprised when the Academy rejected him.

Pasteur’s germ theory built on the work of Hungarian obstetrician Ignaz Semmelweis, who was ridiculed for his seemingly modest request that in the interim between doing autopsies and delivering babies, physicians wash their hands.  Semmelweis reasoned deductively that the high postpartum mortality rate among new mothers following delivery by male physicians, as opposed to the low mortality rate by female midwives, was due to infection from a “poisoned” cadaverous substance, inadvertently passed on by physicians who went directly from autopsy room to delivery room. 

The midwives, however, didn’t conduct autopsies, so their hands were, relatively speaking, clean. Now known as sepsis, in Semmelweis’s time the infection was called childbed or puerperal fever.  But Semmelweis’s theory was dismissed, and his distress over thousands of women needlessly dying landed him in a mental institution, where he spent the remainder of his life.

Now even kindergartners know to wash their hands when they’re dirty.

Emergence versus acceptance
The late physicist and science historian Thomas Kuhn, who authored the groundbreaking book The Structure of Scientific Revolutions in 1962, believed the lag between the emergence and acceptance of new ideas is natural and inevitable.  Change, he postulated, can come about only after long periods of stasis because “frameworks must be lived with and explored before they can be broken.” 

Compounding the inertia, and contrary to popular belief, Kuhn held that most scientists are not objective and independent thinkers.  Rather they are conservatives who do their best to implement exactly what they've been taught.  While Kuhn addressed the scientific process, this rigidity is characteristic of all disciplines and is longstanding.  “Inventions have long since reached their limit, and I see no hope for further development,” claimed a blasé Julius Sextus Fontinus, a Roman engineer, in the first century after Christ. 

Nearly two thousand years later, in 1943, an equally blinkered Thomas Watson, then chairman of IBM, declared:  “I think there’s a world market for maybe five computers."
   
Abram Hoffer and Linus Pauling
In the 1950s, the great Canadian psychiatrist Abram Hoffer, an early proponent of vitamin therapy, and two of his colleagues discovered that high-dose niacin lowered bad cholesterol and raised good cholesterol. Later, Hoffer joined Nobel laureate Dr. Linus Pauling to test out Pauling’s theory that Vitamin C was an effective adjunct therapy for cancer patients.  The duo found that the vitamin prolonged the length and the quality of life, and in some cases, particularly in lung cancer, effected long remissions. 

In response to both findings, the medical establishment vilified them.  The bruised Pauling was offended that no one would listen.  But the circumspect Hoffer reasoned that it can take two generations—forty years—for new ideas to be accepted.  With all the speed of a glacier melting (in pre-global-warming time), scientific derision morphed into doubt and, finally, acceptance of niacin as a cholesterol remedy.  While vitamin C hasn’t exactly been embraced as a cancer treatment, in the past few years researchers at the NIH and elsewhere have found it to be effective.  
  
Paul Cheney and Daniel Peterson
In 1984, Dr. Paul Cheney and Dr. Daniel Peterson contacted the CDC about an outbreak of a debilitating illness afflicting the residents of Incline Village, Nevada. As chronicled by Hillary Johnson in her book Osler's Web, epidemiologists Jon Kaplan and Gary Holmes arrived at the tony resort town, saw about 10 ME/CFS patients, then went gambling and skiing.  Twenty-six years later, not much has changed as far as the government response to ME/CFS is concerned.  As a result, many physicians, researchers and citizens still don't understand that it's a grave and sometimes fatal neuroimmune illness. Some continue to debate its existence, as if the disease were a matter of theology, not science. 

Was Abram Hoffer right?  Will it take another 14 years before the government stops shrinking back and dismissing the collection of scientific data, if by their denial they could make fact fiction and alter the grim misadventure this disease has become?  Or, perhaps the fed-up patients will push through and the FDA/NIH XMRV Chronic Fatigue Syndrome study will be published intact in the Proceedings of the National Academy of Sciences, and, like the flip of a switch, the energy changes.
 ***
Apparently, at least for today, it's the latter.  The news from the CFIDS Association this morning:  "The [FDA/NIH] researchers have conducted additional experiments as requested by the reviewers, and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.Sources to CFS Central say that the researchers' conclusions have not changed.  PNAS Editor Dr. Randy Schekman is on vacation and could not be reached for comment.
 

This article, “Cowardly Acts and Everyday Rebellions,” is copyright CFS Central 2010.  All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central.  You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue.  Instead, refer readers to this blog to read the article.

13 comments:

  1. Great blog Mindy. Thanks.

    Just a note though - is that date correct for the Jonathan Swift quote? Is this the same Swift who wrote Gulliver's Travels?

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  2. Great catch,Heidi. I meant 1706, not 1906.

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  3. Mindy, I hope your sources are correct. With all of the rumors going back and forth, I feel like a puppet on a string. Thanks.

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  4. Thx Mindy, made my day :)

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  5. Great work, Mindy. I hope you are right about the NIH/FDA study being published. Here is what the CFIDS Assn has on their website:

    "The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks." (CAA website: http://www.cfids.org/xmrv/default.asp)

    Unfortunately, I don't think they are telling us anything new. They are not telling us WHO is expecting them to be published within weeks or WHY. Through long unhappy experience, most of us have learned to trust what the CAA says only when we see it with our own eyes.

    I certainly hope this time they meant what they implied with that statement--that the HHS has released the paper and that it will be published shortly.

    Patricia Carter

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  6. Thanks, Mindy. I will remain nervous until (a) the study is published for real, and (b) we can see that it hasn't been watered down.

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  7. Great essay, Mindy. It's what I've been wanting to write for years but my brain has been too damn fogged up from this damn disease. Instead I wrote some rambling blog post about ME/CFS and paradigm changes that even I find rather long. ;-)

    It always amazes me that those in the "hard" sciences -- including (especially?) medicine have such hostility toward works like Thomas Kuhn's. I mean, I suppose I shouldn't be surprised because the mantra of science today is that they are above bias and prejudice and are about finding The Truth. Yet one can't help but wonder what our scientific culture would be like today if future scientists and med students were required to read the Structure of Scientific Revolutions like those of us in the social sciences do in grad school.

    For those who are interested -- and don't have the same brain fog issues -- a great book on the history and politics of how we got the Scientific Method is Leviathan and the Air Pump by Steven Shapin and Simon Schaffer. Very relevant to the ME/CFS saga and how its played out.

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  8. Great article. Thanks for the optimistic news. Please keep after Mr. Schekman after he returns from vacation and get a concrete date for publication.

    Dennis Hogan
    Kent, WA

    CFS sufferer for 19+ years

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  9. Brilliant article, Mindy. Many thanks!

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  10. Mindy, by Hoffer's standards, we are right about on time. It was in 1970 that ME was utterly rejected. Curiously it had been accepted as an illness which occurred in epidemic or sporadic outbreaks for a long while. But it didn't have one name; outbreaks were named by location. Shortly after the "Royal Free Disease" in 1955 struck a London hospital with a vengeance the affliction was given the name "myalgic encephalomyelitis" in the UK. Perhaps it's profile had been raised enough to allow it to be attacked, and in 1970 it was,by two doctors, McEvedy and Beard; and it's remained controversial ever since. So, 1970 -2010, forty years.

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  11. Thank you, I needed a bit of hope today. I talked to one of our senators the other day and gave him the short version of the ME/CFIDS story and the recent FDA/NIH research paper hold. He did not seem to know anything about it. I am gathering information for him. Even if they publish the research we need the legislators to understand what has gone on with these government agencies.

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  12. As usual, I enjoyed today's article. I find that viewing events in an historical context gives me a better sense of perspective and patience.

    But honestly, I don't see any revolutionary idea that needs to be accepted in this situation. Scientists and the medical establishment aren't being asked to accept any new paradigm of disease. There's a disease; look for a pathogen. Find the pathogen. Study the pathogen and see if it causes the disease. This is all very conventional.

    It's the politicizing of this disease, the denial that there is a disease, that's bizarre. The only thing really unusual about the disease itself that I can think of is that one could be so sick for so long and not die sooner.

    Medicine has made a shift from Dr Osler's day of trusting and observing the patient to today's reliance almost entirely on lab tests, the so-called "evidence-based" medicine. So today's doctors are mistrustful of a disease (and its patients) that requires a clinical diagnosis. But that's what's being offered to them now: a lab test, a pathogen. So why aren't they embracing it with relief?

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