Re: In Praise of Lyme Activists

GregGerber_at_hotmail.com
Date: 12/29/04 

Date: 29 Dec 2004 01:07:21 -0800

a_weisman@yahoo.com wrote:
>Why not say that we AGREE with Steere's studies
> (when he did studies rather than opinion pieces with no new data for
> years now) which show that MOST people do well--but also document
> treatment failure rates even higher than 10-20%, some show treatment
> failure rates of 35%.
>
> Our real quibble should be that treatment failure rates of 10-35%
>are demonstrable, real, really tragic and unacceptable.

Weisman, I'm confused --I really never have heard an activist in a
leadership position say anything but this -what you suggest. THIS IS
what they say. It is what they say publicly and in their official
handouts and position papers. You have seen official positions saying
otherwise? Where? I am not talking about random patients without an
official voice, but the organized leadership. Where is your evidence
that they say the flakey stuff you contend? I have never heard it,
never seen it written anywhere, not once. Of course, if some crazy
patient on a bulletin board says something well, that is true in any
disease, believe me, if you bother to pay attention. The internet is
rife with health misinformation across the spectrum of diseases and
disorders and conditions.

BTW, most of the Lyme outcome studies with rash entry requirements need
to be thrown out, period, because they didn't differentiate between
disseminating and non-disseminating clones of b burgdorferi. Look, the
treatment failure rate for disseminating clones is far higher than
studies indicate and the non-disseminating clones can be cured with
water: They do NOT disseminate and cannot by definition cause late
stage disease.

Don't be so fast to believe a study has been done well or appropriately
because it comes from said academic. Steere and many others have made
plenty of big time research faux pas due to poor and misleading
methodology --failure to take the clonal situation into account in
their early Lyme studies a prime example. This fills the research with
incredible noise, and often raises it to a level of sloppiness that is
astounding and unbelievable. Hey I could call it sleight of hand if I
weren't such a trusting soul but I would NEVER call it that, never say
such errors are intentional, that is how nice I am. When I see this
kind of error I assume it is an honest error unless I have evidence to
the contrary, and I do not. But on the other hand I wouldn't become a
cheerleader for the perfection of Allen Steere's studies just yet if I
were you. You might be surprised.

GG