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A Brief
Description, Philosophy & History of
the Guai-Support Network (plus Acknowledgements)
Revised: March 17, 2003
Contents:
Guai-SupportNetworkDisclaimer.htm
Mailing List Description
How The Mailing List Works
Mission Statement Mailing List
Mission Statement Network
Background
History & Philosophy
Safe Haven
Web Site
Non-Profit Status
Chatting
Fund
Expanded Direction
Following the Same Path
Acknowledgements
Disclaimer:
Click here
Mailing List Description
The Guai-Support List is a private
semi-moderated support group and is for anyone with an interest in the Guaifenesin
protocol for Fibromyalgia Syndrome (FMS). It is for those who are
following any variation of the protocol, or considering it, and who wish to
share information and support during the process of recovery. It is a
topics list, thus allowing for a broad discussion of many issues to do with FMS,
including; Guai treatment (experiences, discussion & questions), other
treatments for FMS (so long as the member is not merely here to denigrate the
guai protocol) plus other complicating health issues and social
interaction.
The group
discussions operate in the form of a mailing list.
Members write to the list address and all
members who are set to receive mail, receive each member's message into their
own mail box.
There are various options allowing members
to set the topics they wish to receive, whether they want to only receive a
digest (one message containing all the message in a set period) or receive no
messages at all and yet have access to the archives (one can also write their
messages from the archives interface). For more information on how to post
to the list, change settings, etc., please click on this
Posting Guide link.
Members are set to receive several default
topics but can remove any of them to ensure the mailing list suits their
particular purposes. The only non-defaul topic is OTHER. This
contains message unsuitable for the other topics and/or mislabeled messages.
For more information on how the GG topics list works please click on this
Mailing List Topics
link.
There are various other links along the
right side of this (and every other page) so please scan what's there and then
read the different items at your leisure.
Mission Statement Mailing list
To provide a 'safe haven' forum, for people following
(or considering doing so) any rendition of the Guaifenesin protocol for the treatment of
Fibromyalgia, where they can discuss the issues arising out of that treatment
protocol and where they can support and be supported by others sharing that
experience. Helping each individual to be successful with the guaifenesin
protocol is of paramount importance to us.
Click here to become a member,
signoff or change mail options
Mission Statement Guai-Support Network
To provide a range of Services, including
information, resources and access to a mutual support environment, for people
following (or considering doing so) a Guaifenesin protocol for the treatment of
fibromyalgia.
Background
Dr Paul St Amand developed a Guaifenesin
Protocol for treatment of people suffering from Fibromyalgia. Since the protocol
began many people have recovered from their symptoms through following that
Protocol. His work has been 'ground-breaking' and is much appreciated by
the list membership and many in the FMS community.
While the Guai-Support Network has adhered
precisely to Dr St Amand's interpretation of his protocol in the past, it is
considered important by the List Owner that all experiences are available to
inform and support others. This list now acknowledges the experiences of other
practitioners, the list membership, as well as the research done by the Network
Team.
Dr St Amand believes Fibromyalgia is the
early phase of a complex disease leading to Osteoarthritis. He thinks that an
inherited defect permits some type of excessive retention that leads to an
abnormality in the metabolism of phosphate and calcium.
Dr Amand says that Guaifenesin, which is
normally prescribed to loosen mucus (mucolytic effect), has proven to be a most
effective drug for Fibromyalgia.
*Note:
The GG network isn't designed to meet the needs of the whole FMS community, only
those interested in, or following, a Guaifenesin protocol. You can also
discuss your other health issues & treatments under the FMS topic whether
you are taking guai or not. It is requested that one doesn't malign the
guai protocol however, since that is the major purpose of this group (sharing
your experience, even if it was not successful is not viewed as malignant).
History & Philosophy
I created the Guai-Support mailing list
out of compassion in April 1997. My simple goal was to provide access to
information and answers about the Guaifenesin protocol to those suffering with
FMS because this access has proven difficult to get on other mailing lists and
newsgroups. I was not following the Guaifenesin protocol myself at that
time.
The list started with fewer than 10 people
when I was operating manually and when the transition to SJU's automatic
ListServ took place in October 1997 there were approximately 60 people
subscribed . Now there are more than 2300 members [August 4, 2002].
I was new to the net community and
listened in to a few FMS groups. I noticed that those talking about Guaifenesin
(and John Lowe's Thyroid) protocol were being ignored or, unfortunately,
ridiculed; that kind of injustice irked me. I sent a note to one of the lists
asking if anyone would like me to start a private, manual mailing group for
them. I had barely learned email protocols when I did this. I got several
positive replies about both thus began my steep
learning curve (I later changed the Lowe-Recovery list to the FMS-Recovery list
and then years later handed it over to someone else because I couldn't do it
justice given my workload for the GG).
I talked to Dr St Amand and Claudia
Marek, assuring them that if they joined the list I would initiate strategies to
limit their list related workload to a minimum and assuring them that I'd keep
the list dedicated to Dr St Amand's rendition of the protocol. They did agree and it
was a very successful working
relationship. Thanks to their willingness to participate I, along with my
helpers and the long time subscribers, can now answer almost any
question going to the list.
Within 6 months the manual GG list had
grown so large that I had to begin thinking about a host for the software.
Starting posed quite a challenge with my limited knowledge but I began
researching how I could do it and discovered St. John's University Mailing
Lists. I wrote to the person then in charge and explained what the list(s) would
be about and my request was successful.
I created a Salicylate mentoring system
(Sal-mentors) with a few
wonderful members who wanted to help me to help the membership. Mentoring
then expanded into a Buddy
system with another wonderfully helpful group from the membership (now only
available through the mailing list).
Note: December 15, 2002, addition of
'Welcome Wagon' and a Posting Mentor dedicated to helping you feel welcome and
confident to post to the mailing list.
My goal was (and continues to be) to give
everyone the opportunity to share information and concerns in an intimate, safe
environment because I believe this to be an important factor in getting well,
especially when undertaking something as experimental, difficult to follow and little understood as
the Guaifenesin protocol.
Self Help Tools for Guai-Support
Network Users
Aids to navigating the site, list and the protocol itself, are provided so that
Members and non-Members can find things out for themselves as well as
communicate effectively with others to give and receive additional information
where needed. These 'aids' include:
- Search facilities
Members can search our site and
our archives for answers to any
questions they may have. Visitors are not able to search the archives as
these are a Membership privilege.
- *Sal-help data bases and
support mentors/researchers
Due to the potential for salicylates to negatively impact on recovery,
exhaustive work has been (and continues to be) done to provide Members with
vital information about the salicylate content of the products and
medications they use in daily life. Obviously, no list can contain
everything, so we have developed the
'Ingredients'
list to provide Members with this additional tool.
- Archives
Since the Guai-Support List went 'automatic' in 1997, all mail sent to
the list has been saved to the
archives. They contain a wealth of information
to enable Members to find answers to their questions, follow the progress of
'older' and/or previous members and even keep track of their own history,
where they have written in the past.
- Posting support system
Our
Posting mentor
Wendy is at the ready
to help anyone who feel they need practical posting help as well as help with
virus issues, searching the archives and pretty much anything else you might
need assistance with regarding your membership.
- Non-virtual Groups
resources
A data base of
Guai Support
Groups who meet off line was established very quickly after the mailing list
went online.
- Data bases for
doctors who are familiar
with the protocol and mappers,
mapping information and charts.
- Protocol information
- Other Guai and FMS
Tools/Links for Visitors and Members
Opportunity + Rules = Safe Haven
There are detractors of the Guaifenesin
Protocol and also of the different renditions of it . This forum is a safe
haven for those who have already chosen to follow any rendition of the Guaifenesin protocol or who
are interested in doing so. Please have respect for the choices of your
fellow members. Genuine discussion from an open mind is always welcome.
The list forum provides the opportunity
for it's members to share warm and welcoming support at a crucial time.
If you are not on the protocol you will get information
through this network to help you decide if it's for you.
The various rules I've instituted for the
mailing list forum are to
provide a safe space for suffering, tired and confused people. At first
some of the rules may seem intimidating to some newbies but I can assure you
that after a very short time with us you will appreciate them.
If you have any concerns please discuss
them with
Wendy
(posting mentor) or
me
(Tesa),
While you may not have been subscribed to
other lists where the rules are so well enforced, you should be aware that none
of the rules on this list are any different from various mailing list forums. List Managers enforce their rules according to what they think is best for their
membership and in line with the dynamics of their programming, albeit some do
not lay them out so clearly as you will find here. My experience on other lists has lead me to
believe that stating ALL the rules in detail, along with the reasons for them,
is much less confusing, although sometimes daunting at first to some. Most
members who stick around a little while really appreciate the orderly way the
list is run when they discover how much it helps them. Remember you can
get help from our
Posting Mentor Wendy if you need it.
Web site
The 'Guai Support web site' was a direct
outgrowth of the 'Guai Support Mailing List'. Once I had list management
technology under my belt I decided to enhance the Guai-Support experience,
through the provision of a web site where all the protocol information could be
permanently available. This facilitated self service and empowered members and
other interested people to find and read information as and when they wanted it,
without having to depend on others to answer their basic questions. It also
meant that people didn't have to print everything out to be sure it was
available again rather than lost when they emptied their deleted mail boxes.
The web site, too, has expanded over time.
Now there are numerous resources available through it, including
protocol papers, blank body maps, protocol doctors, suppliers, resources for
those running their own support groups, etc.
Non-Profit
Status
The financial cost of providing these
services has been high, especially to a pensioner, receiving a subsistence
income. (This may not be obvious to people living in a heavily populated
country, such as UK or USA, where high volume usually leads to lower prices for
such things as internet access, computers, etc.). Recouping costs does not
constitute 'for-profit' operations.
The GuaiCycling Market Place (GCMP) is
separate from the 'resources' list, where 'goods and services' are listed
without cost to members or professionals. The GCMP provides advertising to a
select group of 'goods and services' providers for a small commission. Ethical behaviour is expected from all advertisers and members are encouraged to
complain to the list owner if they have any concerns about a listed advertiser.
Advertisers have been removed when deemed unsuitable.
People accessing the site, including list
members, choose whether to access the GCMP or click on advertisements throughout
the site and advertisers are not permitted to
SPAM members.
Chatting
The
Live Chat Forum
was added 2001 to enable members to follow up on points of interest at a level
that could not be supported by the list. Members can make a 'date' to meet each
other, either for a specific topic or just to 'shoot the breeze'. Q&A sessions
can also be set up for interested parties.
Fund
Very soon after the
mailing list began Elizabeth Rouse
Linthead1@AOL.COM
invoked the idea of a research fund and it quickly became obvious that a fund
might be started via the GG list with the goal to carry out
a double
blind study on the protocol, and thus I created the FUND topic (no
longer operational)
for that purpose. Although there is now enough money to fund the start
of various research projects, the blind study has not yet gone ahead and now
there is talk of one manufacturer of Guaifenesin being courted to fund the study. See
archives for the history of this issue by inserting Elizabeth's email address.
Expanded Direction
Many people have complained over the time
the list has been operating, that they have not experienced the success reported
by some others on the protocol. These people were following the directions,
titrating their dose appropriately, getting mapped and checking their sal status
carefully. In an effort to help those who were 'falling through the cracks', a
GG ListOwner Project Assistant began to research information related to some LA
Guaifenesin medication and how it might be problematic for some people and thus
hinder their progress. A
Guaifenesin product
troubleshooting FAQ was created to explain the issues and the research
findings were sent to the members and Dr St Amand.
PLEASE NOTE:
Dr St Amand says that 'all guai is guai' thus continues with that
understanding and prefers not to be associated with the new information. Because
this web site advertises and receives a small commission from the sale of some
guaifenesin products, Dr St Amand wishes everyone to know that he doesn't
endorse any Guaifenesin product.
(2004: He now endorses several specific producers/suppliers.)
The outcome of the research, coupled with
the experiences reported by some members and practitioners,
led to a decision to expand the list in order to provide information and support
for those whose experience is outside the 'norm'.
In addition to guai, the mailing list now
discusses many other treatments/protocols, under the FMS topic.
Want to keep following the same path?
If you are happy and successful with the
protocol as it has always been presented, there is no need to be concerned.
There is no intention or desire to undermine successful progress by encouraging
unnecessary changes. Treatment FAQ's indicate where other points of view
are raised and Wendy, the list owner or other support team members can clarify where you may be unsure about where something 'fits' within
the protocol continuum. Just send a message to the list with your queries.
Acknowledgements
Many, many thanks to:
- Val Barnes for current sponsoring of the
GG web site;
- My assistants; Wendy Howard (Sal-mentor/Posting mentor/Buddy) Terry K. and Magi
Marcon.
- Current Sal-mentor; Wendy Howard
- Past Sal-Consultants; Ellen Rakes, Sandra Reher,
Rita Levine (&)
- Current Support Team; Wendy Howard, Karen Martineson,
Karyn Stagg, Shirley Barrios, (&)
- Past Buddies: Val Barnes, Roseanna
Conlon Harris, Donna Ellis (&)
- Bonny Carlin for her tireless help to
members who need to restrict sugars, carbs, amylose, etc., to any degree, her
nutrition information and for
allowing me to publish many of her items on this web site.
- Kathy Shuller for her support and
assistance to me in various matters,
- thanks to Dr. Greg Penniston for
his continuing contribution and accessibility to members.
- several members who shall remain
nameless (for obvious reasons) for their donations/gifts which have contributed
to my ability to continue bringing information and support to those with FMS,
and,
- Also, thanks to those who have now moved
on but, during their time here, contributed their expertise to our
membership:
- Raymond Bowersock for his past hosting
of the GG web site;
- Past Buddies; Robyn Scott, Roseanna
Conlon Harris, Donna Ellis (&)
- Kirstin Maxwell for her tutoring of
Sal-Mentor trainees and her support
- Heather Vaughan for her editing
suggestions re sal information, her contributions to the Sal-FAQ, her tutoring
of Sal-Mentor trainees & her past
support regarding sals,
- Carla Martin for her past tireless work
in contacting companies & searching stores to confirm whether a product
contained Salicylates
- Dr R. Paul St Amand &
his assistant Claudia Marek1, for their
help with advice to Tesa regarding the protocol.
1 (although she
has, until recently, always used the 'Nurse' designation, Claudia Marek is not a licensed nurse.)
The Guai-Support web site, and all the
names associated with the Guai-Support list, are the property of the
Guai-Support ListOwner Tesa Marcon
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