The Rules of Engagement, for lack of a better phrase

In the last few months, I've received too many private notes about the tenor of the site.  There have been requests to delete members and requests to remove topics and posts.  I have done none of this, but I have been forced to limit responses on two threads when the topics were abandoned and the personal sniping became incessant.  It might be time to address a few basic niceties again.

Today, after being terribly precoccupied with a personal project the past few weeks, I took a deep breath and responded to two members who wrote me this morning.  Both had concerns about the deterioration, and nature, of the website and both had opposite opinions on what should be done.  I responded to both of them with almost the same words.  Here, with a bit of judicious editing, is my response:

I have lived my entire life trying to walk in someone else's shoes,  imagining how others will  feel and respond before I speak or act, so when I get to the point of putting things in absolute terms, it means I have finally hit a point of zero tolerance.

Yes, I would really like it if people would 'get well together' and would 'lift each other up no matter what'.  Please don't mistake my addressing unproductive posts or bad behaviors for being against the topic that was being discussed.   I have no issues with the topic and have encouraged it. I have also planned with Dylan to establish a page for natural medicine (regarding eradicating cpni).  Everyone has a right to post their viewpoints, so long as they're able to substantiate their rationale as well as maintain respect for those whose views differ. 

What must not continue, however, is the sniping and the juvenile behaviors.  Being strident and insistent that one's own choice must be everyone's sole choice is not acceptable.   Dominating the site and taking the site off-track is more than impolite. 

The grating and the stress resulting from the recent tone of the discussion boards has driven at least three long-time members from the site and has caused others not to post anymore.  As you all know, stress exacerbates our disease, no matter which manifestation we have.  No one wants to come here and find pettiness or snarking. 

This site is a refuge for the sickest of the sick and for those who have no other source of information on cpn or its treatment.  Historically, it has been a place for conversation and support.  In the last few months, it's become contentious and sometimes it's been little more than a place to bicker and jab at each other.  When addressing this I am trying to be mindful of understanding for everyone, as well as maintain the long-term integrity of the site. 

When I sent a British educator to the site a month ago, she wrote me and said she couldn't wade through all the personal nonsense that was going on, so the site was off-putting to her.  And, therefore, she didn't get the information she needed to address her infection.  Getting that information out is the goal here, not elbowing each other in the schoolyard at recess.

Everyone needs to realize they are not on Facebook, where you can say anything you want to anyone, in any manner you choose to say it.  

So, please be kind to one another in your responses.  Ask yourself, would you address your mother/father/spouse/boss/sister in the manner you're using now?

Please understand we really are all in the same little canoe here, together, instead of swatting each other with our oars.  Those who are asked for clarification or direction should give that information or direction without getting defensive about it. 

Respect one another.  Your opinion is not the only 'right' opinion.  If you are espousing a theory, label it as theory.  If you have a personal opinion, say it's an opinion.  If you are stating fact, be prepared to direct others to the source, or a resource, or some clarification or information relating to it. 

We're not in a contest here.   Please be mindful of that.

And, please, though it sounds trite, this site is not Facebook, or a casual social site.  It is a serious website to address serious issues and provide information for those who have nowhere else to find it on the entire internet. 



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

Thank you Mac!

Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly

Very well put, Mac and I hope that everyone will take note.  There are sites which are so tightly regulated that members are thrown off if they say even one word out of line but this site has always been different.  This very difference means that people can maybe behave in a way that if they stopped for a minute or so and thought, they would behave differently.  Hopefully now there will be a little more pause for thought.

When Jim first started the site he asked me to do it with him but I refused because I wanted the time to use my newly regained abilities.  More recently Mac has taken over the duties of running the site, but she also has other things to do: friends and family who need her attention, work to do on her house restoration, creative work with stained glass and so on.  Please bear all this in mind and hopefully the people who have been driven off the site will eventually find themselves able to return, and more of the people whose names apear in the "Who's New" section will actually post rather than decide that this is not the site for them.................................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thank you Mack for stating so eloquently what needed to be said. I can't post very often because I am so sick and often times on my back but I rely on this site as my refuge. This is the place I can come and feel like I belong like I am one of you. Here we all have the same mission and it is an honorable one and we all plan on attacking the same evil so it makes this a special union because the stakes are so high so I would appreciate it if we could respect each other's opinions and learn to let some things just go. If I don't like a particular thread because it starts to get ugly I just simply decide not to read it it's that easy. I just hope some of the regular folks come back because I rely on them so much and I value their input so much. I am glad that you said what you said Macintosh and I appreciate all that you do for the site and it's mission. 



MS: First sx '93 dx '09 no obvious relapses just steady decline since '07. Crippling fatigue, too weak to sit up for extended periods of time. Cane/walkers/electric chair inside, helicopter outside. 

Started protocol 11/16/13.  1200mg N

Brava, MacK!

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Thank you Mack for ALL that you do!

I am really looking forward to the new section on natural medicine to treat CPn.  I find a lot of the antibiotics hard for me to take, so perhaps there may be some options for me to consider down the road -- maybe when I am ready fur the interrmitent stage.

Thanks again!

Hey Mack,

Some forums allow the folks running them to "pin" a note to the top.  If that can be done, this topic is a good candidate for that.

Surely folks can have a conversation that is carefully thought out (to eliminate accidentally overstating things or making unsupportable claims) and just as certainly, folks can conduct themselves in an otherwise civilized fashion! 

Best & Highest Regards,

Proud Parent of Rick - R started CAP in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Way ahead of you, Tom!  It's called a 'sticky' (probably comes from post-it notes?) and it will be there before the new year begins.  First things first, and what's first is some rich text and formatting issues, which got the go-ahead today.

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