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POST-VIRAL PIX--MYALGIC ENCEPHALOMYELITIS/FIBROMYALGIA--32 YRS

K. Weber kweber at efn.org
Wed Jan 8 04:39:43 EST 1997



I've had this Website for a long time.  Marc Fluks and my friend Bob
helped me with it, but I've been a little shy about putting it out. 
ME/FM is a serious disease which effects most body systems via
biochemicals which are released in a timed manner by our sleeping and
waking cycles. It is these chemicals which make you feel bad when you
have infections.

When you have a bad cold, the flu, or another infection, you may sleep
during the day and be awake at night. You may ache all over.  You may
be very very weak and fatigued.  You may be dizzy.  You might throw up
or have diarrhea.  

CFS starts out like a case of bad flu or
mononucleosis which never goes away.  After six months, doctors look
for the diagnostic signs of the illness.  They may take MRIs of the
brain and do a blood workup called the Chronic Fatigue Panel. 
Expensive workups are not necessary to diagnose CFS, and are usually
not done outside the developed world.  It is not true, though, as some
say, that CFS need be a poorly documented diagnosis.  Documentation
may be more limited, however, where the tests cannot be afforded.

Freud had a great
deal to say about CFS/ME/FM which some with some with high positions
inside the American think would be better forgotten except as an
historical eccentricity of the early and middle twentieth century. 
Even those managing his archives say that he himself did not use his
own ideas when working with his own patients. CFS and other
catastrophic illnesses have physical causes.  They sometimes follow
periods of stress, and stress reduction can make them easier to bear.

I do
not believe that there 
is or was any single prognosis in ME/FM.  Similar or identical
conditions have existed throughout history, and medical historians are
working to find information which might shed light on the current
epidemic and what we might expect.  My grandpa, who began having
trouble the same year I did, is 93 and wishing he could join all his
pals and friends down to the cemetery.  His brother, who had it too,
drank our local version of Ma Huang and died at 80 of Leukemia.  My
aunt, who has Polyarteritis Nodosa and a thyroid problem--which looks
like CFS to me--is 80 and still has good weeks when she can drive the
two blocks to church.  

I know also that there are people sicker than me, children whose lungs
don't stop though they can't speak or move.  It should be assumed that
they are awake and aware and in great pain.  CFS is one of the most
painful diseases known to man. A whole lot of people that got sick
since 1989, who are moving along like the bulge in the boa
constrictor, tend to make the rest of us feel like we are abnormal.
They are still portable for the most part, and this makes them easy to
research.

I still enjoy much of my life, but find it hard to get out.  I slide
out of my chair--all the way out--unless I am affixed with adhesive
tape, which hurts when you pull it off.  After some years with too
little home help, I got down to a staggering 84 lbs. at 5.9.  My
doctor and nutritionist twisted my arm to get me to use a feeding
syringe if I finished my food and was still hungry.  I gradually lost
the ability to lift the cups, and it is getting harder to swallow.  

None of this means that I'm not exactly the same person you've known
on the net for the last few years.  I do have ME/FM.  I have had a
complete diagnosis of exclusion and a positive diagnosis by my local
physician in consultation with a major CFIDS specialist.  The latter
wonder of compassion reviewed all of my test results and my films.

Many of you know that I had a massive venous thrombosis in 1989, which
I narrowly survived.  There was a problem with clot lysis, which
lasted eighteen months or so afterwards.  

I'm sure that I survived for some reason, and I'm still trying to
figure out what it is.  I think it has to do with establishing ME/FM
as a medical rather than a political or defense issue.  It is a
medical disease, and ought to be mentioned only in discussions
suitable to its medical nature.

My Website is at:

www.efn.org/~kweber

Some other good CFS/CFIDS/ME/FM Websites are:

WWW:  http//www.astro.uva.nl/fluks
Picture:  http://www.astro.uva.nl/fluks/fluks.gif

These sites include everything.  Some of the material may be out of
date or biased.  Everything on them could not represent the opinion of
any single person, let alone Marc Fluks.

http://www.stealthvirus.com/










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