Epidemic
Denials
By Matthew Weil
There recently was a post forwarded to me from a chat group on
the internet. The discussion was on the confusion between the
terms of epidemics, outbreaks and clusters. For those long-term
patients who are familiar with the history of CFIDS/ME and of
the politics that has been ongoing, you can skip the rest of
this article. For the newly or recently diagnosed patients, I
suggest you read Osler's Web: Inside the Labyrinth of the
Chronic Fatigue Syndrome Epidemic. Note the last word of the
title.
The post forwarded to me was written by a patient who was
told by a scientist from the Centers for Disease and Prevention
(yes, the same federal agency that funds that other national
CFIDS group) that they do not consider these clusters or
outbreaks an "epidemic...because they don't know if CFS is a
contagious disease." The writer then pleaded, "Can we please
talk about something important?"
I'll begin by noting that there is little else one can
attribute to an outbreak where the people are unrelated, have
had no relationships with one another and who have been studied
carefully to find common things that may have brought on their
illnesses. And I want to also note that PIV-5 is a contagious
disease. But let's back up the entire discussion with some
facts that that particular patient seemed to have conveniently
ignored.
The first carefully documented epidemic noted by a medical
journal occurred in Los Angeles in 1934. Doctors, nurses and
patients got sick during a polio outbreak. Yet, they didn't
have polio. They had muscle weakness (no, it wasn't dubbed
"fatigue" then), involuntary muscle contractions, muscle
twitching, myoclonic problems, sensory abnormalities and
parathesias, vasomoter changes and some had muscle
inflammation. It was called benign poliomyelitis. It is now
called CFIDS (chronic fatigue immune dysfunction syndrome) or
CFS (chronic fatigue syndrome) or ME (myalgic encephalomyelitis)
or a few other names. There are patients alive today who still
suffer from this original outbreak. They have been diagnosed,
more recently, with ME. Although the medical journal reported
on the 200 that got sick at the Los Angeles County General
Hospital, many more in that area got sick that same summer. A
U.S. Health Bulletin described the chronic polio-like illness as
"atypical polio." The same year, an epidemic was taking place in
England at the Royal Free Hospital. Those who are still living
have been re-diagnosed with ME.
Another famous epidemic occurred in Iceland in the late 1948
in Akureyri, Iceland that was very much like poliomyelitis.
More women than men got sick although the younger ones had a
nearly equal sex ratio and high school aged children were
vulnerable although those very young as well as those quite old
were rare. They looked at water, milk and foods and even
sewerage but found nothing. By 1955, this "Icelandic Disease"
was looked at again. Only 25% had recovered and over 65% had
objective neurological signs. It was yet another name for
CFIDS/ME. Only a few months after the Akureyri epidemic,
another outbreak occurred in Adelaide and, of 800 patients
admitted to the hospital, most were told they had "epidemic
neuromyasthenia" which had symptoms indistinguishable from polio
but with no microbiologic evidence of polio. This became known
as the Royal Free Hospital disease. Years later, the illness
was said to be caused by hysteria yet most remain sick to this
day and have CFIDS/ME. That same year, an epidemic of the same
type was found in New York State and one in Cumbria. Just a
year later, in 1953, an quite intense outbreak happened in
Washington, DC in a psychiatric hospital. Of the 200 personnel
in the hospital, 50 got sick and the majority were the nursing
students.
In the 1970's, another outbreak of "epidemic
neuromyasthenia" happened at a children's hospital in England.
A number of nurses (145) along with others were affected. In
1975, "a severe epidemic of communicable, apparent viral disease
at the Mercy San Juan Hospital in Carmichael, a suburb of
Sacramento, California," writes Erich D. Ryll, M.D. "...fearing
that some people might die, I asked that the CDC become
involved...the disease was apparently due to an unknown agent,
presumably a virus...I have followed these patients on a daily
basis since 1975." Just a year earlier, there wqas another
outbreak in London and, this time, the conclusion was that it
could not be hysteria.
But let's skip to more recent history...in the 1980's,
there was an epidemic of what is now known as CFIDS/ME that
occurred in Incline Village, Nevada. Hundreds were sick
including nearby teachers in an elementary school. At about the
same time, another epidemic was going on in Lyndonville, New
York. Now, Lyndonville is a tiny, rural town that borders on
the Lake Ontario. This was known as an epidemic of children but
it also hit adults and even farm animals! From these two
epidemics, we were left with specialists who saw and treated
those affected and some had their own families and staff members
infected. Children, adults, even farm animals an entire country
apart getting sick...can anyone suggest anything but an
epidemic? But the CDC was called in to see the Nevada
"outbreak" and found nothing that interested them but the fine
skiing to be had. A state health agency was called in to see
the New York outbreak and barely stayed long enough to grab a
pizza. A careful study of this outbreak was presented to the
Society for Epidemiologic Research in 1988. David S. Bell,
M.D., wrote in The Doctor's Guide to Chronic Fatigue Syndrome,
"I believe that many outbreaks like that in Lyndonville have
occurred across the country but have gone unrecognized." Dr.
Peter Behan, a neurologist and CFIDS/ME specialist, wrote, "The
illness occurs both sporadically and in epidemics, with cases
being reported from all over the US, Europe, Australia and South
Africa...it is stressed that the syndrome is an epidemic disease
with periodic outbreaks of epidemic prevalence" (Critical
Reviews in Neurobiology, 1988, volume 4). From the 1930's to the
present time, there were outbreaks in Switzerland, Denmark,
Germany, Sierra Leone, Greece, Lebanon, Ireland, New Zealand and
many in the US and England.
After these well publicized epidemics in the 1980's
occurred,
others happened but word had already spread and the way a
physician was treated if they reported it and it had been in
the media. The last one recorded was in California at a high
school in 1990. There were outbreaks in elementary schools in
several states, in communities from California to Maine and even
one in a convent in Rhode Island. There have been epidemics in
summer camps and in boarding schools.
My own daughter was diagnosed by a famous pediatrician who
specialized in CFIDS/ME years after I had been diagnosed. He
told me, "It would be unusual for me to diagnose a child without
having at least one parent with the illness." With no history
of molestation, does this say anything other than contagion?
Over 100,000 people in the U.S. have CFIDS/ME. Only about
240 people in the world have found themselves infected with
avian influenza H5N1 and most of them worked closely with sick
birds. If it finds a way to jump species more easily, we may
have another pandemic or epidemic on our hands, but for now no
real precautions are necessary. Yet the CDC has a lot to say
about an impending "bird flu epidemic" that they want to try to
stave off while they ignore an epidemic that is already among us
and has been for years.
What else is the CDC hiding? What other lies are patients
swallowing today? How can the CDC brag about their educational
campaign when they are not being truthful? How long must we
wait for the truth from them?
