Re: In Praise of Lyme Activists

a_weisman_at_yahoo.com
Date: 12/29/04 

Date: 29 Dec 2004 06:58:46 -0800

GregGerber@hotmail.com wrote:
> 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.

And another thing: "organized leadership" "official voice[s]" "official
position papers" well how do you square that with the quaint and
romantic notion that this is all a self described "grassroots
movement."

And please note that most "grassroots movements" have TERRIBLE track
records; typically they are known for being ineffective poorly
organized, achieving little or nothing particularly nothing lasting,
and amount to lots of sound and fury signifying NOTHING (and in the
case of Lyme, not really much sound or fury meaning no real numbers
ever, but I will admit that the few who do participate sure are LOUD
and obnoxious). I mean this is a "movement" that involves a few who
speak loudly and CLAIM to speak for many but have no basis for saying
so (which doesn't stop them) and who echoes the refrain "we will not go
away" which makes them sound like herpes!

Show me the "official position papers" and press releases from
"official voices" and all the other stuff. You say you've NEVER heard
what I've said; I say I have.

But when you have heard what you say you've never heard, you dismiss it
as coming from "random patients on the internet"

Well the Lyme "activist" movement IS largely random patients on the
internet! Which is one of the big problems.

Do YOU consider Kathleen to be a "leader" an "activist" a "patient
advocate" an "official voice" OR a random patient on the internet?

And the truth is that she is probably BOTH.

She worked closely with LDF. She is given writing credits on some
articles by "llmds" and ILADS stuff. She started about half a dozen or
more websites and ruled them with an erratic arbitrary bizzare but iron
fist. She issued action alerts that many responded to.

(*I am NOT saying that she said what I said other "leaders/advocates"
did in the eariler post about the topic of chronic Lyme; I am asking
these questions to clarify what you mean and how you distinguish an
"official" leader or voice or position paper etc from "random patients
on the internet" greg).

She certainly had her own manifestos. Were those "official position
papers"

See, this is one of the big problems with all of this: this is all very
murky in Lymeland. Who speaks for whom? What is "official" and what
isn't.

Is Ellen Lubarsky an "official voice" a "leader" or what? Is she a
"random patient on the internet?"

What about "tincup" (that freaking anonymous trailer park dwelling
hillbilly moron). "Official voice" OR random (anonymous) patient on the
internet?

What about Lisa? What about the lisa impersonators?

Who is what?

And how does one become "official" what is the process, who elects
whom, who authorizes whom to speak for who else?

Please clarify. Give me a program so I can tell the "official" players
from those who just ran on the field and joined the game?
Because I am VERY confused.

Thanks in advance greg.