Decorum on a Forum

 

Decorum on a Forum

I have been reflecting on this topic for some time as I participate on this site. (I have been a member here since 2007.)  Some activity over the last several months, and as of late, prompts me to express my feelings here in my blog

We are a diverse group and come here to participate for many different reasons - some out fear, some to confirm their sanity, others frustration with doctors, others to find support, and to ask questions.  This IS the ONLY dedicated CPNi support site.   It was my lifeline when I was so very, very ill and still is one of the few places one can go to have comrades who understand what this process is about.   

 It should also a place where every member can feel comfortable in  expressing their questions, thoughts and opinions (or differences of).  We have many different levels of knowledge and experiences here, all of which add to the value and importance of this site. 

Most of us can interpret when one is having a bad day, or possibly experiencing a Flagyli die off rage. J    (And to the newbies, you will in time, LOL. )   We also can discern unacceptable, intentional behavior....

What I, and others, think should NOT be happening on a forum such is this is the taunting, ridiculing, posting of misinformation about,  and public attacks to defame others.    What I have witnessed here on occasion simply would not be tolerated on other forums. (And, yes, I have on occasion been guilty, but usually a defense mechanism -- no excuse)

This site is self-governing (so to speak) and technically we are not "policed"; BUT, not having a consequence for bad behavior isn't a freedom the majority  enjoy when they have to endure the transgressions of a few, and because of it stop posting and/or sharing on the site.

There are others who feel the same and are frustrated in their attempts to divert or redirect incidences and their futile requests to the individual(s) to "take it private".

For thought (excerpted from another forum) :

"A good sign of a discussion going south is when a thread shifts from focusing on an issue to personal attack. We are dealing with volatile issues but knee-jerk personal responses can quickly send a discussion veering towards disaster with recriminations lasting long after the actual discussion ends; feelings are hurt, friends are no longer friends, and the forum ceases to be a safe place for all to engage in. Eventually the Forum becomes, if not dominated, at least tainted by overly aggressive individuals, and people with quieter voices flee to safer pastures. Please keep the focus on the facts of the topic at hand - not the person delivering it."

And here are that forum's posting behavioral expectations:

 "RULES:

1. While we honor passionate and informed discussion we will not tolerate rudeness, insulting posts, personal attacks or purposeless inflammatory posts. Personal attacks include:

  • o Attacking someone's character
  • o Referring to members in a pejorative way
  • o Referring to a treatment that works for someone in a pejorative way
  • o Sarcasm intended to belittle someone's beliefs, treatment preferences, etc.
  • o Questioning someone's medical status.
  • o Critiques of individuals or organizations should be done in the spirit of constructive discourse; simply dumping on a person or organization is not conducive to the kind of conversation we strive for.
  • o Wild conspiracy theories are not suitable subjects and posts with them will be pruned from the Forums.
  • o Questioning whether someone is ‘a mole'. Discerning whether someone is a 'mole' is a slippery slope that we will not engage in or the other hand...
  • o 'Trolls' - members who's chief goal appears to be to sow discord and persist in argumentative and divisive behavior will be warned, and, if necessary removed from the Forum.
  • o Attacking people or groups based on race, age, gender, sexual orientation or religious beliefs.
  • o It is not permitted to advocate, encourage or condone physical violence, threats of violence, or harassment against anyone, whether members of this forum or not."

Perhaps it's time............

JeanneRoz  

Comments

Thanks Jim K I don't read

Thanks Jim K

I don't read the  "Why this website" as stating it is specifically for discussion of the CAPi protocol, but it is implied . I suppose if I started it I would word the mission statement a little differently.

But you started it and you know why you did it

I agree that CAP is the best treatment for me and others so far and I see your point about people wanting to keep the focus on what works but at the same time I think people should feel free to discuss other approaches as adjuncts or alternatives and should not feel they are being " shouted down"  For the most part I think there is a pretty good balance of CAP and alternate approaches (I think you set it up that way)

Really I have very few complaints here and I appreciate the work you and the moderators do, it's a greaet asset

 

 

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

What we've had is a group

What we've had is a group culture. One that developed over time from the tone and spirit of the original members. It too had occasion to get out of balance from time to time. Mostly the problem of off-limits behavior has been self-correcting, with little needed from the "moderator," a role that I have as site owner/founder. I much prefer forum members re-setting the tone rather than I. A kind of a benevolent anarchy approach.

Mostly people here are helpful, polite argumentative over issues, spirited about theoretical and factual discussions, and over all quite passionate about the importance of Cpnhelp.org as a unique forum. Spirited arguments are welcomed, but personal attacks are a no-no. And anyone who does so is a stupid *!#%*! WinkJust kidding!

Homina- If you go to the home page you’ll see that the focal point of Cpn treatment here is through antibioticsi, the CAPi. That being the case, people can be somewhat protective about maintaining a focus on the stated mission so that the discussion and help isn’t “taken over” by other agendas. As it says on the home page:

Why this website?
Chlamydia Pneumoniae (Cpn) has been implicated in such a wide variety of diseasesi that information about it's treatment and science is scattered about the web and tends to be focused on just one of these illnesses. We hope to be a central source of information, which will allow us to share findings and compare treatment responses across the variety of problems Cpn causes. Work at Vanderbilt University by Stratton et al, extended by British physician David Wheldoni has formulated Combination Antibiotic Protocolsi (CAPi's) to treat the multiple life phases of Cpn and fully eradicate this persistent infection.
That said, we do have some forums for adjuncts and other related but not central discussions, and this includes alternative approaches to Cpn treatment here and there. My concern, as others here, is that people new to the site don’t get confused about what is the central focus and treatment being supported here. Until new research demonstrates better protocols, the CAP is it.

 

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

There are some people who

There are some people who are here because they've looked at their own case, and at medicine, and have made the judgement that Cpni is a better explanation than any other for what ails them, or at least is one of the top contenders. There are others who are here because they're trying everything. The latter really is not a viable strategy. There's not enough time to try everything -- at least not enough to give it a good test. Instead those people usually just give something a quick try, and report that it's working because they feel better, or maybe that it's working because they feel worse ("from die-off"). I have tended not to argue with such reports, but that has not been out of respect for them; on the contrary, I feel they are not even worth arguing with.

I agree Keeping your

I agree

Keeping your differences dignified helps everyone to learn 

 

I know I'm new and may not have been here long enough to have freeness of speech but I feel compelled to say 

One thing I noticed about this board is some of it's members treat the abxi protocol like some kind of religious dogma and anyone that wants to discuss something else for the sake of knowing if it works or not is treated as somewhat of a heretic (by some)

While abxi seems  to be the best protocol let's remember that we are all trying to get healthy and anyone that wants to consider someting outside of abx protocol as an alternative or an adjunct to abx should be able to do so without censure

Knowledge is not a bad thing 

Thanks you guys for all your helpful suggestions so far 

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Jeanneroz~  Thanks for a

Jeanneroz~  Thanks for a thoughtful post. 

Sarah and MacKintosh~  Your comments are also well thought out and appreciated.  

I am reminded of something my mother taught me:  "If you can't say something kind, it's better to not talk at all."  

Comments, posts, even different opinions can all be stated in a kind manner.  The world would be a better place if we all responded to others (via the internet or in person) in a kindly way.  

I like Sarah's idea of seeing spring as a new start....both in the world of seasons and in how we choose to interact with others.

Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Well said, MacK.  I

Well said, MacK.  I certainly haven't come across such an open forum and really I wouldn't like it any other way.  This does bring responsibilities to the people who use the site, though, something people sometimes seem to forget.  In the beginning I wrote a lot on the site, but now not nearly so much: partly because I have other things to do, things which a few years ago I thought I would no longer be able to do, but partly because the lightheartedness seems to have gone.  People are either arguing or are deathly serious but if you are feeling down you don't really want either.  I know of several people who would willingly spend more time here answering questions or pointing people in the right direction but they are put off by the bad humour.  Last week it was the spring equinox, a time which I like to take as the start of the new year.  Wouldn't it be nice if it was the start of the new year for this site?.........Sarah    
    
A Journey through Light and Shadow
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Disagreeing on a public

Disagreeing on a public forum requires a bit of self-restraint (or, when necessary, editorial action).  It isn't the same as a philosophical disagreement with a friend, while sitting at the kitchen table, sipping coffee.

Philosophical disagreement is normal; we all come from different backgrounds, with different skillsets and memories and knowledge.  Sometimes, even cultural bias comes into play.  One can say disagreement is to be expected. 

The problem, however, is when disagreements become personal attacks. Issues can be debated. Personal denigration is out of line. Feuds are best left to private exchanges, else the climate becomes so uncomfortable that people are unwilling to subject themselves to visiting at all.

In any online community, but particularly one so small and specialized as ours, members should naturally feel a responsibility to maintain the credibility of the site.  Pettiness and personal feuding negate the validity and integrity of the site and information contained on it.  If readers are made uncomfortable when they visit, where, exactly, should they go as an alternative to this site?  Frightened caregivers and newly diagnosed patients do not have the strength or energy to wade through swamps of inappropriate behavior and verbiage.

This is the only site I have ever encountered that has no discernible code of conduct as part of the terms of use.  I find that refreshing, yet, I wonder if gives 'license to kill' by its absence.  I suppose we are left to remind participants, as JeanneRoz has done here, that some behaviors are best left off the indelible world wide web.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I don't have a strong

I don't have a strong opinion about a set of rules.

But its funny that Norman should weigh in.  I think his debates with Paul are a good example of disagreements that are enlightening for all to read (as well as entertaining sometimes) but also remain respectful concerning their disagreements.

Started CAPi for Cpni on 11/14/10 - Per my doctor, paused Abxi 5/18/13 - NACi, T3, St Johns Wort, B-complex, Vit C, Vit D3 (8,000/day), Vit E, Astragalus, Chlorella, Chelation with Alpha Lipoic Acid">i. Started Buhner protocal (2nd edition) on 8/30/16.

Agreed.  I have disagreed

Agreed. 

I have disagreed with Norman before, but have always felt that he remained respectful.  I think lleach pointed out a good model for the site; we don't have to agree, we just have to respect one another when we don't.

 

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

Forums with lots of vague

Forums with lots of vague rules like that tend to have lots of rule-lawyering. Sometimes I prefer the insults.