Monday, May 2, 2011

The Holocaust and ME/CFS

    Today is Yom Hashoah, Holocaust Remembrance Day, the day for
remembering the six million Jews who were murdered 1941-45.
    A very sensible article in yesterday's New York Times, covering the
opening of a new Holocaust museum in Los Angeles, cautions people
quite correctly against seeing universality in the Holocaust and
comparing it to other tragedies of mass murder. No, the Jewish
Holocaust was unique, Stalin's starvation of the Ukrainians in the
1930s was unique, the Armenian massacre was unique, and so on.
    Nonetheless, there are certain aspects of human behavior which
facilitated the Nazi Holocaust that one cannot help but notice in the
actions of present-day societies. These are sometimes the same
behaviors that have facilitated the medical establishment and even
democratic governments to turn their backs on the suffering caused by ME/CFS.
    Certainly we patients are not murdered, but many have been left
bed-bound and house-bound in conditions not unfairly termed a 'living
death" by patients.
These helpless are estimated to number 250,000
among the United States' one million ME/CFS patients. This suggests
that, of the world's likely 17 million ME/CFS patients, some four
million have been barred by disease from partaking in all but the
tiniest occasional morsels of life.

    To be absolutely clear; our situation is not remotely horrific to
the level of history's legendary mass slaughters and I don't mean to
even halfway imply that it is. But it does count as yet another  very
nasty outcome for humankind due to certain flaws in human character
that one saw at work during the Holocaust:
   
    Most widespread of flaws is the human tendency to shrug our
shoulders at another's plight while our minds build denials to save
us from having to pay attention. Back then a neighbor might well have
pretended to himself that the Jewish family next door would just be
taken off someplace uncomfortable for a while, and one could hardly
bother oneself about every such difficulty. Similarly, in more modern
times man's aptitude for convenient denial has helped certain medical
professionals deal with the complex problems posed by ME/CFS by
writing it off as psychological. That way a person can avoid too much
bother while also avoiding guilt. Non-professionals have done the
same.  "It's just a little depression," or "he's playing sick," they
said, to dismiss us and escape the burden of caring.

    Another common flaw is man's propensity to dehumanize his fellow man
as the occasion requires. This crops up over and over in the study of
warfare atrocities -- probably since the beginning of time. The Nazis
put a decade of effort and cunning into the dehumanization that
facilitated making Europe "Jew-free," starting with the Nuremberg
laws and ending with them convicted as vermin. Could this have
happened to ME/CFS patients? If you take out your copy of "Osler's
Web" you'll find a stream of examples where U.S. government officials
seem to regard the patients as a lower life form,
starting with the
first CDC epidemiologist who found the Incline Village patients
unbearably weird. Meanwhile, across the sea in Britain,
psychiatrists' characterizations make us out as deluded, lazy,
manipulative parasites deserving of harsh treatment.

    The third, more societal, flaw is the tendency of institutions and
professionals to fall in line with the prejudices of authorities.
In
the Nazi era subject authorities and institutions by and large
supported the ostracism of Jews, hardly ever resisting orders and
sometimes even magnifying them, as in Vichy. Similarly, in our time
most hospitals, universities and professionals on both sides of the
Atlantic have joined in to shun and boycott any work on ME/CFS that
might confirm the serious biomedical condition that CDC and MRC alike
have denied. Dr. Kenneth Friedman's talk to the NIH SOK on April 8th
provided horror stories about the consequences to one's career of too
much sympathy and interest in ME/CFS.  Meanwhile in Norfolk a key
hospital has refused to house ME/CFS research to be funded by an ME charity.

    The deeds of the Holocaust led philosopher Hannah Arendt to her
famous theory of "the banality of evil."  In this she wrote off
Hitler's murder czar Adolf Eichmann as a mere bureaucrat who followed
orders. But an essay in this week's Forward newspaper debunks Arendt
forcefully. Wrote novelist Thane Rosenbaum, "The darker truth,
however, was that the evidence against Eichmann and his facility with
true evil was self-evident and self-condemning. He was no mere cog;
he cynically and knowingly deployed his anti-Semitism in the hope of
advancing his career."

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