X-Message-Number: 7634
Date: Mon, 3 Feb 1997 16:37:25 -0500 (EST)
Subject: Vissers, AIDS, Cryonet


What can one say about the grossly intemperate and downright stupid things
aired recently on Cryonet by detractors of the Vissers? 

One might think that civility and self-interest alone would prevent many of
these postings, or some of their contents. Who wants to be seen as biased or
vicious? Who wants to offend those whose good will may one day prove
valuable? And why paint yourself into a corner where you are psychologically
almost forced to hope for the failure of a potentially life-saving technique?

Let's look at some of the details. In this post I'll look just at the AIDS
question. I'll omit the names of the offenders, to reduce the automatic
defense mechanism. Of course I'll also limit my remarks to areas of public
knowledge. To save myself time and effort I will also omit dates and numbers
of Cryonet postings; they are all relatively recent. The essentials are as
follows, very briefly:

Detractors try to paint Mrs. Visser as a wild woman who has bypassed all
checkpoints of responsibility single handedly to inject innocent AIDS victims
her poisonous concoctions. 

In fact she had, and had to have, many collaborators in positions of
responsibility and with traditions of responsibility--physicians, nurses,
administrators, university and hospital personnel of many kinds, not to
mention the Minister of Health of
the whole country, who gave support and encouragement. (A presentation to the
full Cabinet is a rare event.) Do the attackers believe that all these people
share her mortal sins?  

Another complaint is that the only known evidence for the efficacy of her
treatment is the testimony of patients, which could be explained by the
placebo effect. Well, some of those who posted this complaint KNEW it wasn't
true, since they had surely read (for example) a recent Platt posting,
relaying South African news reports, to the effect that her treatment
resulted in dramatically and quickly reduced viral counts and dramatically
and quickly increased T cell counts. This is objective evidence.
(Incidentally, Mr. Platt seems to have neglected to relay recent reports more
favorable to the Vissers.)

Further, the sneers at anecdotal evidence are unworthy. Patient testimonials
alone (if they were alone, which they are not) might not be strong evidence,
but neither would they be insignificant. No physician ignores the reports of
his patients.

Still further, the value of patient testimonials depends in part on the
context and the NATURE of the testimonials. It may not be very impressive if
someone just says, "I felt better." But if he says, "My boils disappeared,"
that is a different story, especially if confirmable by hospital personnel.
Yet the detractors spout off on the assumption that "patient testimonials"
means testimonials of the weakest kind, which they were not.

Finally, the attackers imply that no appropriate safety or toxicity studies
have been done. In fact, many have been done. It is true that long term
effects of the medication as given are unknown--but that will not and should
not prevent its use if the indicated short term effect is to pull a patient
back from the brink of death.

It would be refreshing if some of the attackers would publicly recant and
apologize--WITHOUT waiting for more evidence. The EXISTING published
evidence, while still extremely sketchy, is enough to show their behavior

Robert Ettinger 

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