A while back we attempted to have a discussion with the leadership of this forum that went pretty well except with a few. Once those two withdrew, it went very well. The concern of the community managers was quite simple. A singular point of view was acceptable, everything else was not. Viewpoints contrary to that view point were moderated, members suspended threats made etc.
There were many people who spent much of their time criticizing people who had looked into other possible causes of TN as well as treatment such as Pain management, Cyber knife, chiropractic. There was an attempt to make this board an advocacy group, to stop DSM-IV. (despite the fact it actually opened pain treatment for many) This is not the first community where this had become a problem. Back at the beginning I made the mistake of fighting back, going on discussion boards and squabbling with those who attacked. I even found myself defending viewpoint I totally disagreed with hoping for reasonable discussion.That did nothing but create even more squabbling.
A turning point for me was the day a friend said, “Don’t get into a pissing contest with a skunk.” The metaphor struck home … and I stopped going into forums to defend open discussion. It’s not necessary. (Don't mistake this with pure quackery and "natural cures" and the folks who promote them, poof and they are gone, we are still evidence based. We just need to recognize that peer reviewed isn't all its cracked up to be, the peers usually share the same viewpoint....)
Now, here’s the kicker: Those who have been doing the criticizing and attacking contrary viewpoints on these forums have NOT improved their lives or others in the least. If exploratory brain surgery worked for you fine. If someone else however uses it as an example, their may be a problem.
I AM GOING TO ASK ONE LAST TIME to think differently. It is time stop for all of you to start thinking differently quit criticizing people and look for what you can learn from them. Started to take note of their good points – there are many. Looking at their good points will open a door for you. If you back off your massive egos, and allow folks to LEARN and assimilate as much information as possible. They then have tools to deal with their disease.
We have a family of skunks living by my barn. Other than the constant stink, they actually are pretty good neighbors. They eliminate a lot of vermin and snakes. But despite all of that, the stink is too much and they are going to lose their happy home. Despite how much good they do, I frankly am tired of 3 threads a day being started to defend one point of view or another with some of the WORST anecdotal evidence I have ever seen. WE ARE NOT HELPING EACH OTHER. It will STOP. Discuss away - That's fine, point to resources - That's fine, share YOUR EXPERIENCES ( not your hairdressers third cousins next door neighbor) - That's fine. Debate with each other - that's fine BUT the instant any of it becomes "PERSONAL" its over.
IF you are not a TN patient please be VERY careful in what you say or do. You easily be misunderstood. We are an evidenced based community. While evidence may vary we don't allow for antimed propagandizing here.
TJ, Community Manager