Re: ILADS guidelines now online

From: A_Weisman (a_weisman_at_yahoo.com)
Date: 11/30/04 

Date: 30 Nov 2004 14:28:07 -0800

"Martijn" <Kw3Ls@hotmal.com> wrote in message news:<41aca944$0$764$3a628fcd@reader20.nntp.hccnet.nl>...
> "A_Weisman" <a_weisman@yahoo.com> schreef in bericht
> news:e55e6d97.0411291713.424a6938@posting.google.com...
>
> > Yes I have seen them (though I did NOT purchase them
>
> Same here ;)

Good for you.

> > Yes I read it martijn. Not sure why you posted it?
>
> Because it was 'funny' someone talks on a website about the thread.

I found it a bit disconcerting and annoying since my statements were
misrepresented.

Of course right here my statements are often misinterpreted.

And "people" say I've said things I never did. Which is apparently
easier for them than actually responding to what I DO say.

> > But honestly it could have provoked a lot more ridiculous name
> > calling.
>
> Name calling? You name calling me? =O

No I wouldn't name call you. I meant it could easily have incited the
"usual suspects."

> Not sure why you cite it now.
>
> I thought this gave some answer:
> This was ILADS' response:
> The reason that there is a charge is that ILADS made an agreement with
> the journal that accepted our Guidelines for publication to purchase a
> certain amount. That's how they make their money. If we want it
> published,
> then we agree to their terms. After the initial 5000 are sold, we will
> be
> putting them up on the web site. However, we need to recoup the cost we
> incurred before that happens. In principle, we agree with you. It's
> just not
> our reality.

That is "some answer." I'd call it utter bullshit and point out that
it totally misses the point.

First WHAT COSTS? These doctors did this for themselves. Did they
charge for their time? If anything they should be tithing some % of
the outrageous fees they charge to support the organizations they
expect to support them.

Second, if the costs were the $ they paid to publish them in a vanity
publication read by almost no one on earth, well that was their
decision. The point is that it was a bad terrible stupid and
disastrous decision. The "costs" shouldn't have been incurred. And if
they were these doctors should have borne it themselves. The act of
publishing in the joke magazine was self defeating.

>From the narrow perspective of their self absorbed tunnel vision, this
is an "answer." From where I sit it says more about how screwed up
they are then providing an answer to anything else.

> Phyllis (or someone else) DID absolutely post that LDA supported
the
> > guidelines with money and they wanted their money back!
>
> Dunno about that.

Absolutely it was posted.

> > To clarify: Evidence is not provided to support the recommendations
> > provided in the guidelines which is a big deal in the EBM era
> > (evidence based medicine). The IDSA guidelines DID have this.
>
> What's your opinion on the recommendations of the ILADS?

Which recommendations? Treating Lyme with antibiotics?

Duh.

> > And the 66 references aren't really "evidence." Opinion pieces about
> > Lyme don't amount to "evidence." Studies do. Not every journal article
> > is "Evidence" many are primarily or completely commentary.
>
> Do you think there exists evidence to support the recommendations?

Not really. The clinical experience of patients and these doctors is
the "evidence" however it is not in a form that constitutes anything
like the kind of "evidence" that anyone in medicine will listen to.

Before someone says that this IS "anecdotal evidence" the answer is
that it is NOT. It is a bunch of testimonials. "Anecdotal evidence"
refers to published reports of experiences in clinical practice rather
than originating from a study. However, there are data collected and
reported and standards for publication.

Lyme patients don't bother with this important distinction.
Testimonials are the currency of fringe and quack "medicine."
Anecdotal reporting is a part of mainstream medicine.

> > Listen ILADS is a good concept but has been poorly executed. And so
> > were the guidelines.
>
> Well, I agree it was a little awkward that you had to pay to get them and
> that the guidelines are a little disappointing. But don't worry, soon they
> are for free. :)

More than a little akward my friend. Politically and scientifically
dense, self defeating and monumentally stupid of them.

As to them being free, well that is about what they're worth.

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