Re: In Praise of Lyme Activists

a_weisman_at_yahoo.com
Date: 12/29/04 

Date: 29 Dec 2004 09:37:36 -0800

GregGerber@hotmail.com wrote:
> I will make my answer to these posts relatively brief. I conside Pat
> Smith, president of LDA, to have an official leadership position and
> true power. I have never heard her say that everyone who gets Lyme
> disease gets desperately sick, but she has addressed the issue of the
> treatment failures many times in many official speeches and
statements.
> If you are saying she said something YOU need to prove it --you need
to
> prove the positive, don't ask me to prove the negative, it doesn't
> exist. I am not gonna clutter this newsgroup with statements and
> speeches lacking the claims you say are made --that would be all of
> them. No I do not consider Lisa or Kathleen to be leaders or people
> with any official role. I do not want to continue with this argument,
I
> consider it ridiculous.

Well I NEVER said that "the pat" said it. I honestly don't know whether
she has or not. I do know that I have NEVER heard her or anyone else
state with clarity that the issue is the treatment failures and the
fact that they are being blithely dismissed, glossed over, ignored.

And that is a mistake. It is always best in an argument to concede what
is not arguable but then draw the line at the real issue. It makes it
easier to deal with the more discrete differences, it narrows them,
permits focus. And it adds to crediblity.

So the thing to say is "Well while it MAY BE TRUE that MOST people,
even 80% do just fine with the "standard course of treatment" we are
here fighting for the rest of them. And if one accepts that the figure
is 10-20% and that the incidence of lyme is 250,00-500,000 OR MORE
annually, well that's a LOT of people to dismiss, ignore, give up on,
abandon all hope for! And THAT is NOT acceptable!"

And add "We're NOT EVEN SURE about the 80% because this disease, like
syphillis, may lie dormant or latent and reemerge later confounding
diagnosis and proper treatment. IN FACT we have scientific reason to
believe that a percentage of various diseases is actually Lyme
reemerging in this fashion, and that includes a percentage which may be
a significant percentage but even if small is still important, of ALS,
Alzheimer's, MS, arthritis, Parkinson's etc."

"And it is criminal NOT to do something about this. It is NOT
acceptable!"

"So we NEED, we DEMAND more research, not glib answers but real ones
based on hard work and science. We can potentially prevent an awful lot
of unecessary debility and disability and carnage!"

"And we have an obligation to do so!"

Pretty simple.

Not simplistic but simple.

Show me where "the pat" and/or anyone else "official" or not who has
said that.

No I do NOT archive the speeches emails or other "wisdom" of "the pat."

I actually IMMEDIATELY delete anything from her because it is all self
serving self aggrandizing galling nonsense in my opinion and life is
too damned short.

But yes I have heard it. From "the pat" well I don't know don't
remember for sure.

But as to your test of "officialdom" well no it doesn't fly. ALL Of the
other folks are as "official" as "the pat." And as legitimate. Or
illegitimate and I think they are all illegitimate, at least to the
extent that they purport to speak for or represent anyone other than
those who have specifically consented to be represented by them.

And that is pretty much no one at all.

I sure never gave them my proxy. I wasn't asked for it. I HATE that
they claim to speak for Lyme patientS rather than themselves. I find
them embarassing incompetent LIARS knaves and fools and ninnies.

And though I don't like to speak for her, WHY is kathleen any less
"official" than "the pat"

She has her own organization and is head of it. She has a contingent
(of witless morons) who follow her devotedly, slavishly, thoughtlessly.
She has been made a member of other groups (I think she was made an
ILADS member one of the few patients) and was a coauthor on several
articles (for some stupid reason).

So why not? She sure purports to speak for ALL Lyme patients! And so do
ALL the others!

Relevant Pages

  • Re: In Praise of Lyme Activists
    ... As to "true power" well that's a funny one. ... And NO ONE on the Lyme patient ... I could agree that "The pat" is OFFICIOUS, ... addressed the topic of the frequency of treatment failures. ...
    (sci.med.diseases.lyme)
  • Re: New here questions on lyme and other
    ... and since my symptoms were so bizarre I thought I ... it could've been lyme. ... neuroLyme patients. ... And you're 100% right about LymeNet, but remember that Pat Smith got ...
    (sci.med.diseases.lyme)
  • Re: New here questions on lyme and other
    ... and since my symptoms were so bizarre I thought I ... it could've been lyme. ... neuroLyme patients. ... And you're 100% right about LymeNet, but remember that Pat Smith got ...
    (sci.med.diseases.lyme)
  • Re: writing to your newspaper might save a life
    ... > about the association between Lyme and ALS. ... Well SELF CONGRATULATIONS to you Phyllis. ... Speaking of BIG PATS, how the hell is that big fat ole battleaxe PAT ...
    (sci.med.diseases.lyme)
  • Re: IIS state Log Help
    ... Thanks again pat for the reply, just one question though (to get it from the horses mouth so to speak). ... Dean ...
    (microsoft.public.inetserver.iis)