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Guai-SupportTM Network: Management
Notices
Revised October 30, 2005
From time to time issues arise with the
potential to impact on the effective running of the mailing list. This
page will contain key management decisions, responses and clarifications
intended to enhance members' understanding.
The archives of the GG have changed
and can now be found at:.
http://community.lsoft.com/archives/GUAI-SUPPORT.html
The new mailing list address is:
GUAI-SUPPORT@COMMUNITY.LSOFT.COM
Contents:
Warning
re Trademark Issue & Libel
Comment on Dual Membership
Management Notice re
Conduct In Other Forums
Research into Guai Product Report
October 19, 2003:
FDA News
Announcement of New
Group
Long Acting Vs Quick Acting Confusion (Guai Product)
For Profit?
No Difference with Twice Daily Dosing
Comment
re Trademark
Comment on 'The
Support Group Controversy'
Warning
re Trademark Issue & Libel, Nov 8, 2000
Date Wed, 8 Nov 2000 031620 +1100
Sender FMS/Guaifenesin Recovery <GUAI-SUPPORT@MAELSTROM.STJOHNS.EDU>
From Tesa Marcon <vashtii@OPTUSHOME.COM.AU>
Subject All Warning re Trademark issue &
Libel.
Dear Guais,
My initial response to new groups starting is always a positive one; there is
always room for other models and structures. My heartfelt desire is to be a part
of a united effort focused on promoting the guaifenesin protocol, supporting
those who follow it and disseminating information. In keeping with this view I
have always encouraged people to start their own forums and promote them on my
list to encourage others to take a look.
Recently an egroup forum opened with the name
GuaiSupport1 which
unfortunately was quickly dominated by a group of self-serving, self-involved
malcontents who, rather than providing a support group, set their inconsiderable
minds to slander and whining about Guai-Support. In addition, they apparently
had no desire to provide anything original and stole my trademarked names as
well as spent their time hatching childish plots to sabotage this list.
The use of my trademark names by Rita Wondrak is a legal violation of my
rights. Rita and others are aware that these names were instituted on my list
and have been used for 3 years. Rita informed me late last year that she had
registered my Sal-Free name as a domain name and she categorically refuses to
relinquish it. She has now registered the GuaiSupport name, in full knowledge
that, no matter what excuses she makes, it is my intellectual property and she
has no moral or legal right to it.
Let me make a few things clear to all
Until now I have not removed anyone from this list for membership in another
list; only those who have abused me, made libelous and malignant remarks about
me, or who have been party to the theft of my intellectual property, have ever
been removed;
In future, I will remove any members of my Guai-Support List who joins
another forum in which the above conduct occurs. They will be considered to be
party to the actions of the forum owners;
Association with Rita Wondrak in relation to
websites2, or any other
activities where my intellectual property is used, will also result in removal
from my lists;
While it is possible for determined troublemakers to sign up again under an
alias, new members may be questioned to establish their identities and removed
where responses are unsatisfactory;
Complaints to Dr St Amand and Claudia are an imposition on them in their
efforts to help FMS sufferers and a waste of the complainants' time
(complainants will be removed from GG);
Complaints to SJU leave the complainant open to being banned from all SJU
lists (complainants will be removed from GG).
Let me reassure you that I am well aware of the loyalty and honesty of the
overwhelming majority of the list membership. Instigators of the questionable
behaviour referred to in this message, are few. They had previously been removed
for abusive behaviour or had removed themselves in pique.
I have never had any expectation of pleasing everybody or meeting everybody's
needs. If you want a less structured forum I welcome the formation of any new
group whose focus is other than maligning me.
Please do not reply to the ALL topic - IF you have questions please reply
privately to me instead.
Kind regards,
Guai-Support ListOwner........ Tesa Marcon
Official Guai-Support List web site http//www.netromall.com/guai-support/
Archives:
http//maelstrom.stjohns.edu/archives/Guai-Support.html
Coping Strategies: http//www.geocities.com/fms_guaifenesin/index.html
1 The above mentioned group changed its name
to: egroup-guaifenesin
and then again later to:
guaifenesin@yahoogroups.com
Also incude: LowDoseGuaiers@yahoogroups.com
2
http://guaifenesin.com/net
http://www.guaifenesin.com/LowDoseGuaiers.htm
http://groups.yahoo.com/group/LowDoseGuaiers/
Comment on Dual Membership:
I reserve the right to remove
anyone from my list who participates in a forum where my good name and
reputation are attacked. Only willful blindness would interpret this
posting as a ban on dual membership in general.
Management Notice re Conduct In Other Forums
April 21, 2002
Date Sun, 21 Apr 2002 225016 +1000
From Tesa Marcon vashtii@OPTUSHOME.COM.AU
Subject All Management Notice Re Conduct In Other Forums
To GUAI-SUPPORT@MAELSTROM.STJOHNS.EDU
Dear Guais,
I have received queries in relation to
rumours that I remove people from my list for statements they make on other
lists. I want to clarify my policy on this matter.
I do not remove members for criticizing
the Guaifenesin protocol, doctor St. Amand, this list or its structure/rules.
I do remove members who participate in
character assassination or malicious, libelous campaigns, against myself, my
helpers or other Guai-Support members in other forums. This includes those who
lie about their posting experience or about their communications with list
managers or other members. A further example of unacceptable behaviour would be
to make outrageous statements about my motives and ethics. For example, that I
am 'hitler' or 'barbaric' or 'uncaring' about others.
I understand and accept that the structure of my list does not please everybody;
I can not hope to do so. Members can operate at any level they wish, either full
participation, or just 'reading/listening' for information purposes. Members who
do not find what they are looking for on this list can supplement or replace it
with membership on other lists without feeling the need to behave in malicious
and unethical ways because they could not get their own way here. This is
cowardly behavior, given that these people are relying on my ethical standards
which prevent my using their private statements (made to me and my management
team) or their list mail, in defense of my character, should I desire to do
so.
My reasoning for the way I operate the
list and the consequent decisions I make, is based on my desire to provide a
professional, focused forum for the benefit of the broad membership (more
details)
Let me make this clear People are at
liberty to make any statements they wish, wherever they wish; they do not need
my permission to do so. At the same time, I work extremely hard to provide this
forum and I do not wish or expect that those who are taking what I offer will go
elsewhere and malign me. If that is your intent or desire please have the
courage of your convictions and the basic ethics to sign off first.
Finally, I acknowledge the vast majority
of members, willing to learn and abide by the rules/guidelines for the benefit
of all, and whose ethics would not permit this type of behavior. I am delighted
to share this journey with you.
Kind regards,
Tesa Marcon (AIM tesa4vashti - type or
*talk* - ICQ 95437893 - MSN)
International Guai-Support Network Owner - Manager
Guai-Support Web Site http//www.netromall.com/guai-support/
Management Notices
http//www.netromall.com/guai-support/management_notices.htm
October 19, 2003:
FDA News
Research
into Guai Product Report
Date Fri, 24 May 2002
From Tesa Marcon
vashtii@OPTUSHOME.COM.AU
Subject [GG] All: Research into Guai Product Report.
To GUAI-SUPPORT@MAELSTROM.STJOHNS.EDU
Fri, 24 May 2002 14:49:03 +1000
Dear Guais,
From time to time, someone reports to the
list that a particular brand of guai did not work for them. However, any time
one person states "Brand X" doesn't work, other people who use "Brand X" report
that it works fine.
Many have wondered how to interpret these
conflicting experiences. A couple of my helpers (project assistants Terry
K & Amy H) have contacted manufacturers and pharmacists (i.e. chemists) for
their perspectives on these reports. The results of their research is detailed
below. I acknowledge and thank all my helpers because there has been a lot of
backlist discussion which guided the course of this research.
First, there are several terms (LA, QA and
OTC) used in this report that I want to define for you. LA guai is made to
dissolve slowly, over a 12 hour period. QA stands for quick acting. QA provides
for an immediate release of medication. OTC stands for 'over the counter' and
means that it can be purchased without a prescription.
Several pharmacists were not surprised
that we hear reports that "Brand X" works for some people and not others. There
is no "best" brand of guai or "bad" brand. This also applies to types of guai,
i.e. QA vs LA. Instead, some (but not all) people may find that their own body
responds differently to different brands and types.
Each manufacturer makes their product
slightly different, from how tightly the tablet is compressed to different
inactive ingredients. These differences may or may not matter for a particular
person. For example, some manufacturers include lactose, some people may have a
problem with lactose and other's do not. This could apply to other ingredients
as well. One person's digestive system may be able to break down a tightly
compressed tablet whereas another person's may not. Also, some people don't do
well with the LA form of medications and may need a QA form of guai.
The manufacturers we contacted (5) stated
that there is no coating on their LA guai. If the tablet is uncoated and comes
out in your stool then it did not dissolve properly. If you see a tablet in your
stool contact your manufacturer to find out if you should return the remaining
guai to them for further testing. They cannot fix a problem if they don't know
that it exists.
Note
that we did not contact all manufacturers. If you have questions about a
particular brand of guai, please consult your pharmacist (chemist) for specific
information.
Some suggestions gleaned from our
discussions with 5 mfg's and 4 pharmacists
1. LA Guai should be taken with at least 8
ounces (i.e. a glass) of water in order to dissolve properly.
2. Do not take guai with juices, use water
instead. Substances in juice may bind with medications, altering their
absorption.
It has been reported that grapefruit juice
alters the absorption of some medications. The effect depends on the medication.
We have no way of knowing how it will affect guai without specific studies of
guai and grapefruit juice.
3. Proper storage of your meds is
important. Heat and/or humidity can affect the efficacy of medications so store
your guai properly, and buy from sellers you trust to do the same.
- Store away from heat and direct light.
- Do not store medicine in the bathroom,
near the kitchen sink, or in other damp places. Heat or moisture may cause the
medicine to break down.
- Do not leave the cotton plug in a
medicine container that has been opened; the cotton may draw moisture into the
container.
- Do not leave the cap off the bottle
4. Some (but not all) manufacturers use
lactose in their tablets. This is true of other medications in addition to guai.
If you are lactose intolerant, consult with your pharmacist regarding any
medications you take to determine which brands don't contain lactose. As of this
date Ethex and Caraco are the two that contain lactose but as mentioned before,
we only contacted 5 mfg's
5. If you suspect that a particular brand
of guai didn't work well for you, ask your pharmacist to only give you the
brand(s) that you find most effective.
If you think you are having problems,
first and foremost, *follow the protocol* to find your cycling dose, monitor
your progress, and check for sals. These methods have stood the test of time and
should be your first line of inquiry. If you have followed the protocol for
finding your dose, monitoring your progress and checking for sals (asking for
help, if necessary) and none of these things fix your problem, consider breaking
your tablets into several pieces (breaking only along the score line will not
remove the time release mechanism), crushing and putting into a capsule or
switching brands. If breaking the time release mechanism works for you, you may
want to consider switching to a quick acting form of guai.
Two pharmacists mentioned that some
individuals won't do well with the various LA forms of medications. Anecdotal
evidence points to some of the newer OTC QA guai products working well for some
people who were experiencing very little to no recovery on the LA guai.
Keep in mind that there is only anecdotal
evidence that breaking tablets or switching brands has helped some people. These
individuals already knew their cycling dose and were experienced/thorough with
sal checks. They encountered problems after good success with guai that they
could not otherwise explain a dramatic shift in cycling pattern, often
characterized by severe, constant pain; a return of symptoms that had previously
become stable and disappeared long ago; and/or a change in their rate of
progress, accompanied by maps confirming the change.
The above efforts may or may not help in a
particular situation. For example, remember that some people have eventually
found hidden sals even though they had already done multiple checks. As another
example, remember that some people who suddenly felt worse discovered they had a
new medical problem unrelated to FMS/CFS.
A report of our findings was sent to Dr.
St. Amand's office and they informed us that they were following through with
their own research. *NOTE: see below for his
rejection of our findings
We hope this information is of use, and
that it helps to address a topic that has puzzled all of us. If you have any
questions, please write to the list and Wendy, Terry, one of the Buddies or I will respond.
We will do our best to address questions
as quickly as possible. Please be patient if you don't get an immediate
response.
If you've had a particular problem with
progress and overcame it with Guai brand or Type changes please feel welcome to
share your experience.
A
FAQ Guai Product Troubleshooter
has been created on the web site to help troubleshoot this issue.
A
Protocol Troubleshooter
has also been developed.
This
Troubleshooting Questionnaire might also help some:
The above links are under 'The Guai
Protocol' heading at the home page and in the link panel to the right of every
page. There are also links within the above URLs to each other where it was
decided they'd be helpful.
If there is a problem with any links
please let me know.
Warmest regards,
Tesa Marcon (AIM tesa4vashti - type or
*talk* - ICQ 95437893 - MSN)
International Guai-Support Network Owner - Manager
Guai-Support Web Site
http//www.psha-inc.com/guai-support/
Revised October 7, 2002
http://www.psha-inc.com/guai-support/FAQ_Guai_Product_Troubleshooter.htm
Above revised according to new
information
Announcement of New Group
September 8, 2002
Date Sun, 8 Sep 2002
Sender FMS/Guaifenesin Recovery
<GUAI-SUPPORT@MAELSTROM.STJOHNS.EDU>
From Tesa Marcon <vashtii@OPTUSHOME.COM.AU>
Subject [GG] All new group (was Guai)
7 Sep 2002Jeana Clemmons <JnClemo@AOL.COM>
wrote ">I have just recently been informed of a new guaifenesin support
group..."
Dear Jeana et al,
This list was commenced 4 years ago to
help FMS sufferers experimenting with the guai protocol developed by Paul St
Amand. In the process of offering support it was hoped that the protocol would
develop a higher profile and facilitate efforts to gain credibility. These
targets have been successfully achieved to this time. Now this list is expanding
to take account of the experiences reported by Guai'ers and practitioners.
This move has not been universally welcomed and I accept that fact. There is an
expressed need for that narrow focus on Paul St Amand's procedures to continue
and I welcome the commencement of a new list for just that purpose.
The owners of the new list have used the
same name as this one and Claudia and I have discussed alternatives for their
new list name. I am assured by Claudia that the name change is in progress. When
that process is complete I will send full details to this list and wish the new
venture every success.
Please be assured that, apart from the
standing rules on this list, there is no barrier to multiple list memberships.
Kind regards, Tesa Marcon
Long Acting Vs
Quick Acting Confusion
Date Tue, 17 Sep 2002
From Tesa Marcon
vashtii@OPTUSHOME.COM.AU
Subject [GG] All Long Acting vs Quick Acting confusion
To GUAI-SUPPORT@MAELSTROM.STJOHNS.EDU
Dear Guais,
A number of people have written to the
list with concerns in relation to QA Vs LA Guai and making reference to Dr St
Amands' views. I hope the following addresses these concerns and, if not, that
people will direct further queries as to his beliefs, to Dr St Amand himself.
Queries relating to Dr Penniston's views may be addressed to him directly.
On p.65 of the book, Dr St Amand states,
"Any pure guaifenesin which has no added pseudoephedrine, dexromethorphan, or
any of the other compounds that may cause side effects is recommended."
and
"Guaifenesin is available in 200 mg
tablets over the counter, but I do not recommend self-treatment."
I asked Dr. St. Amand in November 2001 if OTC 200 mg Guai needed to be taken
more often because it was not LA (I related that HPE had developed 2, 3 and 400
mg which he said had a 6 to 8 hour half life) and he replied, "There will be
no difference with twice daily dosing. The reason
is that the guaifenesin will impact for whatever hours it sits in the body and,
though a few hours in between may provide lower blood levels, the next dose will
again purge heavily. It doesn't matter that it not be perfectly smooth."
(Dr St Amand Fri, 30 Nov 2001 100814 EST)
It has been alleged, on list, by a few of
Dr. St. Amand's patients that he has informed them that GuaiLIfe is not up to
standard and that they should not use it. Since he has made no such claims to me
and it is a potentially libelous statement to make of a product, I believe it
best that this type of report is not mailed to the list. It reflects badly on Dr
St Amand and I am sure that would not be the writers' intent.
Dr St Amand rejects the research into
'brands' and 'types' carried out by the GG team, although we have received no
real feedback as to his reasons beyond 'Guai is Guai' and that he has seen no
patients where it was an issue. The fact that he does not endorse the team's
finding is stated clearly at the top of the Guaifenesin Product Troubleshooting
FAQ on the web site.
We have also been told by a few of his
patients that Dr. St. Amand is urging people not to take GuaiLife because he's
had patients going backwards on it. Why would Dr St Amand leap to the conclusion
that GuaiLife is the cause of patients' lack of progress when, in the past, he
has stated that the usual cause of lack of progress, or regression, was
inadequate dose or blocking. Surely, they would still be likely reasons for
current patients not progressing, given that he does not endorse brand or type
as a problem.
Gregory K. Penniston, D.C., makes no claim
that Dr. St. Amand recommends GuaiLife for the protocol.
What Dr. Penniston says about his GuaiLife
is that:
"GuaiLife is manufactured in a FDA
inspected facility. The FDA was inspecting the manufacturing plant just prior to
the most recent pilling of GuaiLife to make sure that every step in the
manufacturing process followed all appropriate guidelines. In addition I
personally have GuaiLife assayed for purity and proper milligram level, to
double check the manufactures numbers."
Dr Penniston treats his patients on
whatever type of Guaifenesin they choose to take. He has patients on both LA and
QA and those on QA are not necessarily on GuaiLife. After successfully treating
patients for several years on an QA Guai, he developed GuaiLife. He states that,
when his patients are not doing well, he recommends they try a change. He has
found that many changing from LA to QA Guai do better and some of them are able
to take less and still cycle successfully . Patients may make the decision to go
to a lower dose and titrate up again to ensure that they do not overshoot their
correct cycling dose, especially since they may have increased their LA dose to
quite high a level in trying to get results. He uses symptoms and mapping to
help them ascertain their dose.
There is no compulsion for other
practitioners or physicians to follow the Guaifenesin protocol the way Dr. St.
Amand sets it out. The Guai protocol is experimental and many people
(practitioners) have added their own experience and ideas to the mix. For
example Joyce C. Waterhouse's 'Variable Dose, Bob Joy's Whey in combination with
Guai, etc. These ideas may not be in line with Dr St Amand's beliefs, however,
it is up to patient's to make their own decisions as to the treatment they
follow.
I make no recommendation that people
switch from LA to QA guai. I am merely reporting on the research carried out by
the GG team when I say that brand and/or type can be a factor in some cases. It
is an additional factor to be considered, along with inadequate dose and
blocking when a person is not progressing or is regressing.
Members have always been at liberty to
recommend their favourite products/types and that situation hasn't changed. They
can share their experience and recommendations of any Guai product so long as
they don't criticise other member's choices or use the list to make libellous
comments.
No advertising of products takes place on
the list, despite the fact that I am at liberty to do so if I choose.
Advertising takes place only on the GG web site, where people elect to read it, or not.
People's treatment choices should not be a
political issue; we have to respect their right to receive information and make
their own decisions. This list is based on that philosophy. If you have
questions or a particular viewpoint on your own treatment, please share it. If
you want to support others, please do so.
We have more than adequately informed list
members and visitors to the web site that Dr St Amand does not agree with the
issues raised through research by the GG Team. The list management will not
address second-hand comments ostensibly made by Dr St Amand again.
Kind regards,
Tesa Marcon (AIM tesa4vashti - type or *talk* - ICQ 95437893 - MSN)
International Guai-Support Network Owner - Manager
Guai-Support Web Site
http://www.psha-inc.com/guai-support/
For Profit?
Date Fri, 20 Sep 2002
Subject Re [GG] All For Profit? (was FMS Dr.
St. Amands protocal)
To GUAI-SUPPORT@MAELSTROM.STJOHNS.EDU
9/19/2002, onah wrote "this is now a for
profit site??? i missed that. who is making the profit & how?"
Dear Guais,
Thank you Onah and others, for your
questions, both on list and privately, indicating a willingness to examine
information rather than to just accept at face value. Due to Paul St Amand's
ongoing campaign to discredit our research and to undermine the credibility of
this list, I am providing a response to several queries that are surfacing on
the list.
In relation to the 'for profit' statements
made, both on Paul's website and on his list, Paul is well aware of the costs to
me of providing services to members and has been informed all along that
advertising is based on the need to defray costs without charging members. As
Virgie mentioned in her post to the list, Paul's services (including books,
tapes, etc.) are not free and I have no argument with this. He does not get to
decide what goods and services people should receive remuneration for providing.
For further information on this matter, I direct members to the 'Philosophy and
History' page, particularly the 'Non-Profit Status'
section.
In relation to removal of Paul & Claudia
from this list this was done as a result of the illegal use of my list name for
their new list. As I informed members, dialogue between Claudia and myself had
resulted in an agreement to change their name but no feedback nor progress
reports were given in response to my requests for an update; nor was any mention
reported to me of information to their members on the subject. As I had no
information as to any actions they may be taking to surrender my trade marked
name and in order to 'encourage' a response to my queries, I
emailed Paul
yesterday, informing him that his and Claudia's list memberships were suspended,
pending a status report on their intention to comply. I also stated that failure
to respond would force me to publish the relevant correspondence on my site.
Claudia has now responded, saying, in
brief, that she has had difficulty getting agreement to change from the board
but that the process is now in train, however, there is no time line given.
Further, Claudia has written to their list, stating that their removal from this
list was due to their starting another list. They know this is untrue. If they
continue to perpetrate this lie, I will publish the correspondence in order to
refute it and protect my reputation.
In relation to attacks on the research
done in to brands/types of Guai. This research has no relationship to advertised
products; it refers to all Guaifenesin without recommending any particular brand
or product. Nor are members successfully cycling and recovering encouraged to
make changes. I direct members to the information already provided at the
following links
http//www.psha-inc.com/guai-support/management_notices.htm#LAvsQA
http://www.psha-inc.com/sf/HistoryOfGuai-Support.htm#Research
http://www.psha-inc.com/sf/FAQ-GuaiProductTroubleshooter.htm
In closing, please observe the rule not to
discuss management issues on the list. If you have a query, please direct it to
me privately and, if necessary, I will then either respond privately or inform
the membership, depending on the issue.
Kind regards,
Tesa Marcon (AIM tesa4vashti - type or *talk* - ICQ 95437893 - MSN)
International Guai-Support Network Owner - Manager
Guai-Support Web Site http//www.netromall.com/guai-support/
Comment
re Trademark
Thu, 26 Sep 2002
Update re Guai-Support Trademark:
The Trademark issue has been resolved with a change of name by the group
representing Paul St Amand.
Tesa Marcon
Comment
on 'The Support Group Controversy':
The libelous statements and
further demonstration of unconscionable behaviour at this site:
http://www.guaidoc.com/controversy.htm constitute an attack on my
character and good name. I do not intend to join the writer in the
'gutter' of lies and self-serving abuse. Suffice it to say that my
dialogue with the parties involved is terminated pending their demonstration of
more ethical behaviour.
Tesa Marcon
An
Evolving Protocol
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