Newsgroups: sci.med

> In article <7540089@hpfcso.FC.HP.COM> ron@hpfcso.FC.HP.COM (Ron Miller) writes:
> >
> >Actually, it's the other way around. A diagnosis of EBV is a sure sign
> >that your MD is not current in his reading about Chronic Fatigue Syndrome.
> >
>Gordon Banks:
> But, but, but, there really are patients who have EBV.  Infectious
> mono patients, for one.  EBV can also cause meningoencephalitis.

I didn't know this. I thought that EBV was distributed in the population
and had no correlation to anything in particular. But note that
a "diagnosis" of EBV is not the same as a diagnosis of infectious mono or
meningoencephalitis. EBV is not a diagnosis any more than "elevated
temperature" is a diagnosis. It may or may not be a symptom of something.

There is a comparison going 'round in the CFS support circles.
Calling CFS "Chronic Fatigue Syndrome" is like calling pneumonia "chronic
cough syndrome."

> 
> >On the brighter side, at least he didn't diagnose "neuromyasthenia."
> >(Archaic and cryptic term for "mental illness" - one of the default
> > diagnoses for CFS.)
> >
> Do you mean neurasthenia?  Neurasthenia was a very interesting 
> diagnosis made about 100 years ago.  I heard a paper presented
> on neurasthenia, and it sounded almost exactly like CFS.  I think
> it certainly could have been the same disease then as CFS is now.
> It was very common around the turn of the century.
> 

Neurasthenia, that's it. Sorry. 

The Mayo Clinic gave us that useless term without definition. We had to find
our own medical dictionary to decode it. The prescribed treatment was 3 weeks 
of intensive group and individual  psychotherapy.  They wanted to treat for 
mental illness. (We didn't waste the money.)

At that time Laurie couldn't sit up for 20 minutes a day.  When standing
it would take 5 minutes for her blood pressure to go to 80/80 at 150 bpm.
Real mental illness. Can mental illness cause dyslexia too?

After 7 years, a trip to Mayo, a trip to a diagnostic hospital in
Chicago (Northwestern?), and a round of practically all the specialists
in Ft. Collins where the diagnosis was what they specialize in (for at 
least 30 days), our experience with CFS is that it is a 
"diagnose it yourself or commit suicide" disease. 
And don't forget the pleasure of being fired for being unable to go to
work and of having benefits denied for having a non-disease........

Even now, her final MD (she's too tired to keep looking for one who simply
believes her symptoms ) will nearly come to blows with her psychiatrist over 
CFS being mental.  ("Is so!" "Is not!") At least the current one will 
write prescriptions for oddball medications she wants to try when she 
shows him the documentation from the PDR or wherever. (Kutapressin has
helped a LOT and was her idea to try.)

This miserable experience has led us to the conclusion that the medical
profession is on par with dealership auto mechanics. There may be some
good ones, but they aren't  where we have to go to have repairs done.
And, now that we have analysed it ourselves, and contacted others with
similar problems, it seems that the sufferers themselves know more about
it than the doctors. 

This is why I warn people who are "diagnosed" with EBV that they are not
getting a "real" diagnosis. An expert would know that EBV has no presently 
known meaning for a CFS sufferer. This is an indication that the MD is NOT up 
to date on the subject like Dr. Banks. (Admittedly it has to be difficult to
be up to date on everything. Which makes it all the more remarkable that
no doctor we've ever seen uses any books or references before making a
pronouncement. I would not trust an engineer who works that way........) 

From 7 long, miserable years of perspective-
Ron Miller
Newsgroups: sci.med