An Evolving Protocol

February 16, 2003

The information in this document might be better understood if one begins by reading other Management Notices reports on this issue, beginning with Research into Guai Product Report

Let us begin by saying that the Guaifenesin Protocol has successfully reversed Fibromyalgia in many sufferers and for this we are all grateful to Dr Paul St Amand for his work in its development. Our intention and desire is that this Protocol should continue to evolve to the stage where it finds wide acceptance in the medical community. Our fear is that failure to take account of all experiences may 'undermine' or even 'derail' the process to the detriment of all involved.

Guaifenesin treatment is an experimental protocol, developed by Dr Paul St Amand. It is unproven by scientific methods and unaccepted by the majority of the medical community. It relies on anecdotal evidence obtained by Dr St Amand through his practice, as well as, in large part, from the list membership since the Guai-Support List inception in 1997. We have no knowledge of any statistical (or anecdotal) data being gathered, by Dr St Amand, from other Protocol practitioners.  How can the Protocol 'evolve' effectively without input from other practitioner sources and be considered 'proven'?  In the 'forty-three' years Dr St Amand claims for his Protocol, even he has had to make 'adjustments'; Guaifenesin itself is an 'improvement' on previous medications used.

With most protocols, where a 'case' is being developed for its efficacy, there is a tendency to be 'protective' of 'ownership' and to ignore (e.g., Dr Gregory Penniston D.C., Dr J.C. Waterhouse Ph.D) or denigrate (e.g., accusations of 'profiteering') anything which is interpreted (no matter how erroneously) as in opposition to the 'original' protocol.  Suppression of information is against the principles and ethics of the Guai-Support Network owner and Management Team, therefore, all information obtained from members and practitioners is available for Members to utilize in managing their own treatment regime.

No product is 'touted', by this Network, as being superior but there is strong evidence to support the notion that individuals may respond differently to different products.  In the past, prior to the product research carried out by this Network, Dr St Amand insisted that "Guai is Guai" and that a QA (quick acting, non-time-release) Guaifenesin was as effective for the Protocol as LA (long acting, time-release) Guaifenesin.

Since the 'break' between Dr St Amand and the Guai-Support Network, the 'truth' of this statement has apparently changed. Now, QA Guai is no longer as effective and people need to 'take more' to get the same effect as with LA. Since, by his own admission, Dr St Amand has little experience with QA Guai, we find these statements 'puzzling' to say the least. Many of our own members have thrived on the QA products, reducing their dosage and still showing great improvement in their maps and symptoms. These people were often in continual pain on very high doses of the LA products. In many instances they were being told that they must go to even higher doses or that the protocol was "not for the faint hearted". On the other hand, significant numbers of sufferers on 600 mgs per day (the 'starting' dose) were told they were "quick responders" and should be glad of this fact because they would reverse faster; the elusive "good days" were few and far between, were a long time coming or never arrived.

The numbers of people not recovering are unavailable.  Paul St Amand appears to be claiming 100% success rate for his patients in his Errors And Experiments letter, where he states, "...We are now redoing the numbers with currently 1,523 consecutive patients (and counting). At 300 mg guaifenesin twice daily, 16% of our patients reverse. At 600 mg twice daily, another 63% begin recovery. Thus, by the time we reach that amount, 63+16= 79% of patients are underway. Anothr (sic) 11% start reversing at 1800 mg. That means that by that time 90% of our patients are improving. That leaves only 10% who need more.. " (17 Sep 2002).   But Claudia Marek has stated that, "... I can tell you, honestly, the guai does not work for everyone. We know it works of a lot of people. That's all we know." (Claudia Marek, 5 Jan 2000)

Where claims are made that the protocol may not be successful with others, Paul St Amand is inclined to put that failure down to 'patient error'.  None of this information has been supported by publication of the data and so cannot be considered to be definitive 'proof'. 

Many of those 'failing' on the protocol may be unreported, leaving the protocol altogether, or 'invisible' for reasons of which we are unaware. Certainly the hostility to the protocol experienced on some FMS lists indicates numbers of disillusioned sufferers. We are seeking answers for those who do report lack of progress within the 'bounds' of the 'standard' rendition of the protocol, as well as those who have 'dropped out', not attacking the protocol itself.

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