I do not want to go too far afield from the bionet.virology charter
but since this group is likely to draw a continuous stream of people
looking for help with odd syndromes, I want to make clear what I believe
is the general sense of the medical ethics community about diagnosis without
a real patient-doctor bond. Believe me, I am very sympathetic to the plight
of folks with troubling illnesses. That's why I've spent the last 15 years
getting the stuffing kicked out of me in med school, grad school, internship
residency, fellowship, in a low-rent district like infectious diseases
instead of cath-ing for dollars in cardiologyland ;^). The reason to avoid
no-see-em diagnoses is that they are more likely to hurt than help.
-when the patients do not know the "doctor" they have no way
to tell the quacks from the honest docs.
-when the doctors do not know the patient, they have no way of
knowing whether they are getting the straight story.
-when the doctors are not clearly accountable for the advice they
give, it encourages slipshod medicine.
-when the doctor does not know the real person behind the symptoms,
it becomes impossible to balance the risk and benefits of
various clinical strategies against the values and goals
of the individual patient.
-when there is no bond between patient and doctor, it is very difficult
to sustain the level of trust and committment it takes
to see people through serious illness.
I have been on the net for over a decade and I can testify that the level of
advice that gets blithely tossed about here is frighteningly bad. I had to
give up reading sci.med years ago because it was giving me ulcers to see
the blind leading the blind. After numerous attempts to be helpful in areas
where I am an expert and getting flamed by hordes of know-nothings for my
trouble, I realized how much USENET is a magnet for loud-mouth cranks and how
likely it was that unfortunate people desperate for advice would be taken in
by them. Not to be too mean but the previous poster talking about EBV latent
in nerve ganglia is a perfect example of the classic USENET phenomenon of a
person with %1 of a clue, %0 percent willingness to actually look up the
facts, but %100 inclination to fire off their wisdom into cyberspace. I like
to think I am pretty sharp in the diagnosis biz but I will tell you candidly
that I have given what I thought was the best advice, had my patient trust me
and then die horribly from the complications of what I had recommended. You
are never the same after that and it makes you pretty reticent to make flip
analyses with partial information. It is that sense of gravity and
accountability that is missing from so much net.advice. Again in the specific
case of the person with malaise and lymphadenopathy, you would want to be
damn sure this wasn't lymphoma before rattling on about possible untreatable
viral illnesses. Without seeing this person and getting a very complete
history, I would keep my mouth shut except to advise them to find a good
doctor (not to frighten the poster. this is very probably NOT lymphoma but
it would be horrible to miss this diagnosis.)
I agree that there is a real place for information from the "pros"
presented in general terms with clear disclaimers but this is far too
infrequently the case. I have long asked to no avail that serious advice
be accompanied at the very least by a clear citation of one's sources and
level of expertise. If it is not important enough to get off one's fanny
to check the sources, it is not worth posting to the entire world.
Apologies for going on so long about this but it is a real and serious
problem. I know I have no hope of making a dent in the USENET shoot-off-
at-the-keyboard culture, but maybe within our little corner here we could
really try to do right by people, refrain from giving half-baked advice,
provide general information when appropriate and constantly remind advice
seekers that the net is a poor and dangerous substitute for a doctor you
know and trust.
Robin Colgrove MD/PhD
Division of Infectious Diseases
Harvard School of Medicine
colgrove at xtal11.harvard.edu