pagez at aol.com
Thu Dec 1 16:30:42 EST 1994
"Your wisdom should show itself more richer to signify this to the doctor,
for for me to put him to his purgation would perhaps plunge him into more
Mike writes to the Chronic Fatigue Immune Defieciency Syndrome patient
discussion group (Dec 1, 1994):
<My 15 yo daughter has had
episodes that are certainly suggestive of CFS. Apart from the fact she
is female, of my three children, she is the closest to me in terms of
physical features, mental ability and traits etc. But, because of my own
knowledge of the causes and effects of CFS, I am able to help prevent
that full-blown slide into fatigue that a lot of us on this list suffer.
Most of us know that if we had slowed down, prevented becoming stressed,
either physically or mentally, and generally altered our lifestyle BEFORE
we got CFS, we wouldn't have got it. (I hope that makes sense)
By helping my daughter apply these important principals to her own life,
she also won't get it.>
An enemy in our own camp! Psychobabble! This is exactly the kind of
ideology that helps give the world-at-large the misguided perception that
CFIDS is not a real disease, but a psychological illness brought on by
This is tantamount to writing to the AIDS discussion group, or the
Multiple Sclerosis discussion group, and attempting to tell the AIDS
populace or MS sufferers that if they hadn't been stressed out they
wouldn't have gotten sick. Bunk!
My son and I have been dreadfully ill for ten years-since he was four
years old-with CFIDS. We got the "flu" and never got better. It breaks my
heart when I think that my son doesn't even know what it feels like to be
healthy, that he will most likely spend the rest of his life being sick,
unless we can find a cure for this most-likely VIRUS-RELATED illness.
A virus-related illness does not necessarily have to be contagious like
the common cold. During the polio epidemics many people came down with
subclinical bouts of polio, but only those with a genetic or other kind of
predisposition became paralyzed or suffered a clinically-recognized case.
Even a cursory study of modern virology shows that our ignorance is
greater than our understanding. The history of the AIDS epidemic could
have been far different if any of the following were true: if infection
with HIV was like CFIDS and had subjective symptomology (sore throat,
fatigue, etc: it's a big deal to us but it's not very impressive
clinically), if the infections secondary to immune dysfunction were as
they are in CFIDS (ie sinusitis, bronchitis, etc) rather than they are in
AIDS (the ghastly purple or black spots on the skin of Kaposi's sarcoma,
severe wasting, raging dementia, etc), if HIV infection was like CFIDS
(occuring widespread in the general population)-without a easily defined,
politically-hip cluster group in the United States-gay men, and if there
had not been a convenient relationship between the state of science
(retrovirology) and the subsequent scientific ability to detect HIV.
The state of medical science today, our ability to clinically detect
CFIDS, and our ability to detect what is causing it are sadly out of sync.
Even though the virology cowboys have little problem detecting HIV and are
able to define AIDS clinically with little difficulty they are a long way
from a cure. There are at least 5000 viral species known to exist on
Planet Earth and only four percent of them have been described in any
detail scientifically. To make things worse viruses easily
genetically-engineer themselves into new species. Many different strains
of HIV occur in every patient infected with HIV. Seven out of every
100,000 times HIV replicates it transforms itself into a different strain
of virus and there are millions upon millions of HIV viruses present at
any one moment in the body of an HIV sufferer.
Even my doctors (world-renowned infectious disease specialist,
neurologist, and spine specialist), poor souls, believe CFIDS is
viral-related. Was my son stressed out by his pre-school that he loved?
Perhaps he didn't get enough naps? Did I fail to "alter his lifestyle"
(how I hate that word-lifestyle)? Many AIDS sufferers hate the word
lifestyle also, especially since for a number of years-at least-their
illness was blamed on their lifestyle, instead of on a virus where the
blame belonged. Mike makes it appear that if we'd all seen psychiatrists
in time, having had strange prescient feelings that we might get CFIDS if
we didn't, or if we had taken to our beds soon enough, afraid that if we
didn't get enough rest we might just choose to get sick with CFIDS, that
we would indeed not have developed the disease.
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