K. Weber kweber at efn.org
Tue Nov 19 15:32:08 EST 1996

---------- Forwarded message ----------
Date: Tue, 19 Nov 1996 12:29:01 -0800
From: "K. Weber" <kweber at efn.org>
Newsgroups: alt.med.cfs, alt.med.cfs.open, bionet.virology,

One night when I was about 20, and working graveyard in a small Nevada
roadside casino, I got so bored that I wondered what was underneath the
counter. I don't know why I wondered that, but I wondered it, and looked
underneath. This was when I did not have any frank CFIDS or FM, which was
in that particular year a wintertime phenomenon. 

Beneath the counter I discovered a whole new world of secrecy, which had
been maintained through the looks of it through several generations of
bubble gum eaters. Every imaginable color of bubble gum, some faded to
pastels, and every imaginable size of gum ball was represented in that
undercounter world. Some, let me tell you, were real whoppers. It would
have taken weeks to scrape it all off. I decided since The old place was
scheduled to be torn down at the end of the summer, I'd say nothing and
let the wrecking crew be surprised. IF they were surprised. Some of them
probably had gumballs there. 

It is hard to imagine how a phenomenon can be both ubiquitous and go
entirely unnoticed. After Judith Curran died with Dr. Kevorkian's help,
after three dacades of illness and a form of painful semi-paralysis which
had developed over the previous five years, members of a CFS newsgroup
began collecting names of the deceased. Only a few of whom had died by
their own hands. Our reach is small, and does not often extend into the
population most at risk for death from the disease: those who are
homebound, often without medical care, and working class populations
including those of color. A CDC study in SAn Francisco had as its
prelimiary finding
that people of color with the symptoms of the disease were twice as ill as
whites. Thirty five deaths were
recorded in a period of about two months. 

The death rate from CFIDS is far from high. As people age we do not know
either whether it will be low. Death from the disease may not be rare.
Between five hundred thousand and three million individuals in the Unted
States have the disease. At the current time, the CDC is not recording
either death or high morbidity from the disease, even when reports are
made. If you know of deaths from this disease, you may report them by
sending a report to Bill Young at yesco at shore.net.  More official
reporting may eventually be possible, so please keep full information

Kathleen Weber

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