Re: PA needs help passing Lyme legislation

From: Greg Gerber (GregGerber_at_hotmail.com)
Date: 11/19/04 

Date: 19 Nov 2004 07:04:06 -0800

derdrittemann2003@yahoo.com (derdrittemann) wrote in message news:<f2af2263.0411181520.5d69e4b4@posting.google.com>...
> So...I am left with the conclusion that you and others are suggesting
> that we attack STATE legislatures with what we merely BELIEVE to be
> true...

this isn't precisely correct. The word "proof" is absolute, but what
about evidience? Evidence comes in levels from "less than zero" to
uninspiring to sinificant to extraordinary. It is the extraodinary
level of evidence that is proof. There is PLENTY of evidence that Lyme
may be chronic and in fact there is PROOF that it is chronic in a few
individuals, at least. The proof, in individual cases, is not proof of
the larger phenom in large numbers --still, to say there is no proof
is missing the more nuanced task of evaluating the evidence.

>we are trying to pass LAWS based on the Lyme patient
> community's collective assertion that they improve with extended
> treatment...while the prevailing opinion of the scientific community
> is to the contrary. They are attempting to legislate our views into
> existence, right...or...wrong.

all the law should say is that there are two standards of care in the
community. it should recognize both. at least this is my
understanding.

> To a large extent...in my opinion, as I have said before...it is a
> debate within the medical community...a debate that they will resolve,
> eventually..."evidence-based medicine" versus empiricism.

scientifically the debate is very complex. There are other borreliae
beside burgdorferi. there are other infections. Each person has a
unique immune system with spectrums across a wide range of variables
from HLA to toll like receptors. The disease presents differently in
each tissue of the body, and over time. The debate may not be resolved
in the scientific arena for many years.

> I really don't understand what you are saying when you say "this is a
> political disease". You seem to suggest that these measures are
> appropriate because the "opposition" has politicized it. In what way?
> Have they pushed for Lyme-specific legislation? Lobbied for anti-Lyme
> patient bills?

There is certainly evidence of political intervention on this level
going back many yers, but not in state legislatures -- in state health
departments, at federal agencies, there is significant documentary
evidence, indeed.

> In MY OPINION...there IS a political problem with this disease...and
> we all KNOW what it is: the FEDERAL control of the dabate through the
> auspices of the CDC/NIH and its control over FEDERAL research grants.

yes

>
> So what in the HELL good does it do to attack state legislatures...are
> we attempting an "end-run"?

If it helps it's good --if it backfires, then forget it. I am not an
expert here, but i believe that where bills can help they should be
fought for. When a bill turns against you, kill it. That is what
should have happened in CT. It seems to me that the language in the PA
bill is helpful. Let me know what I am missing.

A>s Weisman has correctly observed...just
> produce undeniable proof...end of debate...end of story...

of course but it is a complex issue and won't be easily resolved on
this level for years.

> There is NO question in my mind that this represents an attempt...by
> patients...to wrest control of an issue from medical
> professionals...to substitute their own judgment...based not on
> scientific study...but their own observations and beliefs and internet
> "advocacy".

I think we need to continually remember to differentiate between proof
and evidence. When we do this, your statement, above, can be seen as
facile. After all, there's plenty of evidence but no proof no matter
what your opinion is, and whether you are a patient or a doctor this
holds.

> But I really don't understand what you mean by "wrong", here...you
> seem to mean it in a moral sense...and that, I admit...I don't
> understand.

What I mean is that what has happened to the Lyme patients is a
tragedy that did not need to fall out this way. What happened, the way
things went down, is wrong. I mean morally wrong, not legally wrong.

GG