Rules of the Road... a cautionary reminder

I've had a few questions and concerns raised lately about some of the recommendations made to people asking for help with protocolsi [1], treatment reactions, and other questions. This suggests it is time to restate some of the "rules of the road" here. Old-timers may drift in recalling the need for more cautious or measured tone, and newer members may not be familiar with the care we need in responding with our own impressions.

We have a lot of new members here. This is great, as it means we are reaching more people. We also have a wider variety of illnesses and co-conditions being represented here than ever before. Some people may be using protocols which are different than typical CAPi [2] treatments, and there may be important reasons for those differences.

Please also remember that new folks in particular may be presenting partial or even distorted information about their treatment, and are particularly prone to confusion not only because of the complexity of information, but also because of the state rendered by illness itself. Remember as well that postings stay around, even when information changes so it may have unintended impact.

In other words, please couch your language in terms that acurately reflect the reality of the nature of this board: sharing information, personal experiences, personal researches, with all the uncertainty this involves.

I am a firm, almost religious believer in the freedom of information. I do not want to create a chill here on free discussion. But I do encourage informed and responsible free discussion.

Without the web few would know about Cpn CAP treatment. It was due to ThisIsMS and then Dr. Wheldon's website, that I first heard about Dr. Stratton's work. I personally would be on disability by now if I had not found that information online. In turn, many people are now finding out about this approach through the development of Cpnhelp.org. As it says in our motto: Passing help forward. We really mean that. We are just taking what has been passed to us and continuing to pass it on to others.

All of that said, I will reiterate that no one here should take anything on this site as a recommendation for treatment, or as a diagnosis of medical condition, nor as necessarily accurate information about medications and such. You must take this or any information and confirm it through other sources, especially those sources which are medically knowledgeable.

The web has created a gold-mine of information, as well as a shining light for distributing information (such as through this web site). But it is also a gold mine, if you will forgive the mixed metaphor, of utter crap and misinformation. Sometimes that is true here as well, although we try to refine the crap out of it and preserve the gold!

I believe heartily in the value of accessible information, even at the cost of having to sort through vast amounts of crap, and of free discussion of that information. I've had a very light touch on my editorial oversight here because of that belief.. Mostly we have been self-corrective, at least eventually, and have both kept to our purpose, the treatment of Chlamydia pneumoniae and associated diseasesi [4]i [4], and corrected impressionistic and misinformation that comes from the befuddled or the ill-informed.

All this in mind, while I do not believe in censorship (and have done very little on this site to date) I do believe in responsible discussion. If you find members stating inaccurate information, or making assertions or recommendations which do not meet these cautionaries, please post a comment noting that. It is our community itself which is the best resource at modulating our periodic excesses, and I cannot do it without you. You are all editors at large here.

Well said Jim. Whilst

Submitted by Michele on Sun, 2008-01-06 14:21.

Well said Jim. Whilst there may be one or two amongst us who have the correct medical background for diagnosis or research, most of us have not and very few of us are aware of each other's training or medical status. It is practically impossible to be sure of what other people are going through at a distance even if we had the right medical training. I'll continue to be cautious in my recommendations, although I may ask the odd question, as much to make people think as for my own information. Typical teacher behaviour.... I hope that if I inadvertently step out of line, someone will point out the errors of my ways. We are all responsible for the safe exchange of information on this site.

Michèle (UK) GFAi [5]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [8], At worse EDSSi [9] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Thanks Jim, You are [10]

Submitted by ruthless1 on Sun, 2008-01-06 14:50.

Thanks Jim,

You are absolutely correct & a reminder from time to time is great. We mean well, to be well, to get well.

I will certainly be more cautious.

Our original CPners & site founders should be commended.

again, thank you

CFIDSi [11]/ME 25yrs, FMSi [12], IBSi [13], EBVi [14], Cpn, (insomnia - melatonini [15], GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [16] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

Thanks, Jim. I appreciate

Submitted by Louise on Tue, 2008-05-27 05:48.

Thanks, Jim. I appreciate your well thought out clarifications and cautions here on this page post. It serves as a good reminder.

Louise

CFSi [17]. CPnPositive. BbPositive. WheldonCAP began 6/24/07. NACi [16], Doxyi [6], Roxi, Full Tiniazole Pulses. Intermittent Cholestyramine, 1-2 packets, at bedtime , most often with pulses, and occasionally as needed, for Phorphoria & liposacaride Endotoxini [18] Die-Off Experiences.