Lyme Disease - False Rumors, Accusations, Judgments

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False Rumors, Accusations, Judgments

Martijn

2004-10-27, 10:09 pm

I found the following on http://lymesupport.com/smdl/doc1.htm
Think some of you find this interesting. :-)

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False Rumors, Accusations, Judgments was Re: ILADS.ORG: NEW TREATMENT
GUIDELINES FOR LYME DISEASE (2/7/2004)
regarding a thread at sci.med.diseases.lyme, 2/7/2004.

FYI: Archives of all current and most if not all past posts in
sci.med.diseases.lyme are at http://google.com using the search link for
"Groups" and the name of this usenet group in the search box.
The only exception is those posts marked correctly for "no archive." Since
this information is readily available, in composing replies, pruning of
unnecessary content is appropriate and appreciated by many readers.
This is what a_weisman@hotmail.com asked for...

The rumors and unproven accusations were perpetuated under another thread,
"ILADS Charging for Guidelines?" which was at least 20 posts long and began
1/30/04 by non-other than a_weisman@hotmail.com. Also I would like to clear
up the attempted rumor that I am spamming the group and advertising the
guidelines. I have not any affiliation with ILADS and would do the same
regarding disinformation had it involved any other organization I am
interested in.

Looking at that thread, I quickly find:

> these relatively wealthy doctors also hit their patients up for
> contributions to support a defense fund --and then when they have
> guidelines, which are public in every other disease (even Lyme), and
> which they have produced on the BACKS of these patients, many of them
> sick, disabled, and broke, they deem it appropriate to charge money.

In the words of a_weisman:
"Even worse and more outrageous. The preparation of the new ILADS
guidelines were supported by the LDA of New Jersey which is a non
profit organization supported entirely by funds donated and raised by
Lyme patients."

a_weisman thinks it is outrageous for LDA to support ILADS and assume that
they are entirely supported by Lyme patients. He doesn't really know who is
supporting them. And it's their business who they entrust their gifts of
money to.

Where is the documentation to support this critique by Greg Gerber?
"And the most astonishing thing is this: To recoup the cost of this
vanity publication, ILADS must sell 5,000 copies at $20 each. Does
that mean that ILADS paid this "journal" $100,000 for the honor of
"acceptance" by "peer-review?" And some people make fun of the Journal
of Spirochetal and Tick-Borne Diseases!! At least THAT journal doesn't
charge authors an entry fee, let alone such a hefty one. Did ILADS
have to submit validation of its data, or just a marketing plan, to
garner "acceptance." Gregory Gerber

Note his quote, "Does that mean that ILADS paid this "journal" $100,000 for
the honor of "acceptance" by "peer-review?" This is a QUESTION, not a
statement.

From there, others mistakenly assume that this is true and from this
question, an assumption gave birth to that rumor.

And again from GG:
"Did ILADS > have to submit validation of its data, or just a marketing
plan, to
> garner "acceptance." Gregory Gerber"

That QUESTION gives birth to the rumor that the publication was not properly
substantiated by validation of data, and countless other unjustified
speculations.

And again, questions are thrown into the arena, but those who ask are not
looking for answers or they would have gone and researched and reported back
to us.

Rita asks, Is there a copyright violation from copying and distributing it?
But at that point, she fails to investigate this and report back to the
group. I chose to find out from the source, and the answer is yes.

Then derdrittemann <derdrittemann2003@yahoo.com> wisely suggests, "Best
thing to do there would be to contact them and secure permission before
copying and distributing."

Yet no one in this thread does check into this. Not yet. (At this time I am
unaware of this thread.)

Again, Rita asks, "Why can't the document simply be put in PDF format like
that seen on other profesional sites? The document was never published in a
journal, so being published privately doesn't really lend to its
credibility. It is not a book either, merely about a dozen pages."

She apparently does not search for the answer at this point (Jan. 30) and
wrongly states that "The document was never published in a journal, so being
published privately doesn't really lend to its credibility." Yet it is in
fact an insert in a publication to be released in several months that is
announced at a website she later links to.

Finally that evening, Feb 1, Greg clarifies, "The guidelines are to be
published in a medical journal,..."

I do not understand this statement from Rita: "And if they ever get really
published (in a journal) well,,,,,,,,,,wake me."

On Feb. 1, Rita does go to the publisher's website and offers this
information:
, Rita did in fact provide a link so people could find out about the
publisher:
"Ashley Publications:
http://hermia.ashley-pub.com/vl=280...1/rpsv/home.htm
Contact info:
http://lysander.ashley-pub.com/vl=1.../contact_us.htm
Privacy info, copyright info, etc. available on the site."

Thank-you. Yet fails to correct her earlier mistatement that the guidelines
are not published. Thus others not investigating continue to assume that the
document indeed lacks credibility as Greg asserted. Others keep adding to
the negative rumors and speculations.
Then, buried in the thread we find that Rita did email ILADS.org/">ILADS
regarding suggestions for making a free version of the guidelines available
at the website.
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. Barbara Buchman

Again, Thank-you Rita.
We see that ILADS has plans to make them easily accessible after the sale of
the first 5000 copies.
I suppose this is where the assumption of a price of $100K comes from
($20x5000). However, the list price I saw at the website was $15 for
non-members, $10 for members and $6 in bulk. No postage.

Then Greg states:
"In light of this response, one must conclude that the publication is
not truly peer-review but rather a vanity press. ONLY a vanity press
would charge the authors for publication. It would be more respectable
to post it on the ILADS website on its own than to enter this kind of
arrangement with a "journal" that operates by the rules of vanity
publishing. Gregory Gerber"

And as an after thought, Greg states,

"And the most astonishing thing is this: To recoup the cost of this
vanity publication, ILADS must sell 5,000 copies at $20 each. Does
that mean that ILADS paid this "journal" $100,000 for the honor of
"acceptance" by "peer-review?... Did ILADS
have to submit validation of its data, or just a marketing plan, to
garner "acceptance." Gregory Gerber"

These are his conclusions or rather, assumptions. But he does not actually
confirm either. He assumes this. (I later find out from Barbara Buchman that
the Guidelines they are distributing are a pre-release and had to be
purchased. I can not agree that the publisher is or is not a "vanity press"
or that "ONLY a vanity press would charge the authors for publication."
Where is the evidence? Does he visit the website for the publisher and
notice their strict criteria for acceptance of documents for their
publication? Not that I am aware of.

And look who is most apparent as the one taking these questions and turning
them into misleading and unsubstantiated statements:

"The same person who sold New York to the English for beads and
trinkets worth $16 "negotiated" this "deal" with the publisher.

The $100,000 should have been used to copy and distribute the
guidelines to doctors and patients for FREE.

This is NOT "publishing" this is VANITY. And a lousy deal. What
nitwits.

They'll NEVER sell 5000 copies for $20

And they act like this was their only choice. Or that it was a
legitimate choice. What crap.

You know what would be really funny? IF they paid $100,000 and the
"journal" published the klempner study and other articles that were
published in NEJM at the same time but didn't charge klempner steere
fish and the others. LOL

One more quote:
"Doctors. They're really not all that smart in general. And really lacking
in common sense."

(I guess he's entitled to express his own opinion.)

Non other than a_a_weisman@hotmail.com, Monday, Feb 2, 2004, 8:48 a.m., "Re:
ILIADS Charging for Guidelines?", the one who started this thread with these
negative, unfounded assumptions and judgments:

"This is just about the stupidest thing they could do.

They represent a small minority of doctors. A tiny minority viewpoint.
Probably less than 1%

They are trying to convince others that they are right and the
recognized experts are wrong."

They should be trying to disseminate this information as widely as
possible and making their guidelines as widely available as possible.

Instead they are charging a fee?

That only creates an obstacle to the dissemination of this
information.

this is outrageously stupid.

I think ILADS stands for International Lame Addlebrained Doctors of
Stupidity"

The last sentence of the last post in this thread is: "Yeah what crap."

Such profound "positive" words from this "a_weisman".

If this was a propaganda blitz, it most likely would have been done the
cheapest way possible. But apparently that is not the case.

This all is from one thread, ILADS Charging for Guidelines?"

Then in a thread I start in order to provide information I've collected from
the website, we again find an astounding statement from a_weisman:

"> > > ILADS is a joke. A laughingstock. And deservedly so."

I respect the right for this person to exercise freedom of speech, but it is
clear that this statement is judgmenta, negative and unsubstantiated.

Nancy