Re: LymeNUT: Paranoia on the forum

a_weisman_at_yahoo.com
Date: 02/08/05 

Date: 8 Feb 2005 06:34:28 -0800

I'm posting the materials from the URL in "treepatrol's" post--it comes
from nancy's site (that annoying nancy who used to post here--you
remember, self righteous holier rollier than thou nancy).

And nancy that huggy huggy sweety TOTALLY took statements by me and der
and greg out of all context and distorted the meaning and discussion,
which is now used as "evidence" to feed the LymeNUTTER's paranoia! LOL

--------------------------------------------------------------------
Martijn wrote:

<Snip>

 --------------------
> treepatrol
> Frequent Contributor
>
> Posts: 3535
> From: PA Where the Creeks are Red
> Registered: Jun 2003
> posted 07 February 2005 10:13
>
> Curiosty
> Attack http://news-reader.org/sci.med.diseases.lyme/
> Responce http://lymesupport.com/smdl/doc1.htm
>
> Its out there.
> Advisory to news:sci.med.diseases.lyme readers:
>
> Over the past few years, this newsgroup has become very unhospitable,

> unreliable and often unsupportive regarding presentation of
scientific
> information and support. Certain frequent posters spend much or all
of
> their time attempting to discredit people who post truthful, valid
> posts. One or more bullies may actually be paid or compensated
somehow
> to monopolize this newsgroup and discredit valid posts in order to
> protect a very conservative but antiquated perspective on chronic
Lyme
> disease.
>
> Beware of posters who trash other posters, have a history of
promoting
> McSweegan, American Lyme Disease Foundation, etc., complaining that
> there is too much discussion about chronic Lyme disease and not
enough
> about acute Lyme disease, and/or who claim to be the elected "group
> leader" and that he is changing the charter. There is no such
position
> on this newsgroup. Click here to see the charter. (Be sure to copy
any
> part of this long link that may wrap to the next line.)
>
http://groups-beta.google.com/group/bionet.microbiology/msg/59e51fe4e81e8205?output=gplain.
>
> [This message has been edited by treepatrol (edited 07 February
2005).]

<snip>

Here is the material from that URL, which is nancy berntsen's (you
remember holier rollier than thou nancy who posted her trash here for a
while--update--her support group meetings are cancelled as of 11/2004
indefinitely, I hear from utter lack of interest):

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=28020445/cl=26/nw=1/rpsv/home.htm
     Contact info:
http://lysander.ashley-pub.com/vl=1786731/cl=28/nw=1/rpsv/contact/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

Disclaimer: I have no intentions of responding to any post that
attempts to discredit me or that I deem will waste my time although I
review threads I am involved in. Feel free to contact me directly by
removing "nospam" from my email address. effective as of Feb. 6, 2004.

==============================================

Advisory to news:sci.med.diseases.lyme readers:

Over the past few years, this newsgroup has become very unhospitable,
unreliable and often unsupportive regarding presentation of scientific
information and support. Certain frequent posters spend much or all of
their time attempting to discredit people who post truthful, valid
posts. One or more bullies may actually be paid or compensated somehow
to monopolize this newsgroup and discredit valid posts in order to
protect a very conservative but antiquated perspective on chronic Lyme
disease.

Beware of posters who trash other posters, have a history of promoting
McSweegan, American Lyme Disease Foundation, etc., complaining that
there is too much discussion about chronic Lyme disease and not enough
about acute Lyme disease, and/or who claim to be the elected "group
leader" and that he is changing the charter. There is no such position
on this newsgroup. Click here to see the charter. (Be sure to copy any
part of this long link that may wrap to the next line.)

http://groups.google.com/groups?selm=sci.med.diseases.lyme-RESULT%40uunet.uu.net&output=gplain.

Although someone insists this charter is "outdated" you find that it is
timeless, encouraging scientific discourse and support. You have to
carefully separate the "wheat from the tares." Most of the time the
"wheat" is hard to find amongst "the tares."

Also, beware of any post from jwismille (one "s") who impersonates
jwissmille in an attempt to contradict the posts of jwissmille and to
confuse others.

If what you see here does not meet the criteria for suggested posts,
you should be very wary of the poster.

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
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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.

The charter for sci.med.diseases.lyme is located at this link:

http://groups.google.com/groups?q=sci.med.diseases.lyme&ie=UTF-8&oe=UTF-8&hl=en&btnG=Google+Search

You may also view it at my website:
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For more friendly support and information, go to http://yahoogroups.com
and search for Lyme disease. Also, visit http://flash.lymenet.org,
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