This Is MS Multiple Sclerosis Knowledge & Support Community

In a response to another post on a different thread I made a sarcastic comment which, in retrospect, did nothing but contribute to the problem I was supposedly addressing: to promote a healthy community of discussion and information sharing. I apologize for this to Sharon and any others effected by it. Every time I "dash off" quick internet responses I find I may yield to impulse rather than thoughtfulness.

Sharon's response, however, contained other concerns which I wanted to address further, as it suggests that I may have some part in influencing a better climate related to cpn and antibiotic related issues.

Shayk wrote:Jim

I am both surprised and disappointed by your post. It could start yet another abx squabble that I personally don’t think is necessary or helpful.

I don't see how a "squabble" on any of them prevents discussion in others.

Sharon- as I said elsewhere, you are quite right to be disappointed with my post to Bromley, and it was not a great contribution to a positive atmosphere of discussion. Again, my apologies to you and others influenced by my sarcasm and the potential for adding to the "squabbling." I believe deeply in the difficult task of learning what it is to be a good member. It's not something our society focuses on much. We believe in the importance of leadership, but don't value the importance of followership, or look much at how we contribute to the atmosphere of the communities we belong to. Part of membership is listening to feedback about how ones behavior effects others int he community, and I have serriously listened to yours, Sharon.

Some of my thoughts on this…

I am tired of the squabbles.

To the extent that the primary interest of ThisIsMS members is abx, and I think it is, with wholehearted support, at the acknowledged expense of other members, I become less interested and/or motivated in dedicating any time and/or energy to participate in other discussions. Instead of posting, I can spend time off line on advocacy issues re: MS.

I am tired, worn down, and worn out, of what I perceive to be the negative labels and lack of respect afforded anyone who decides not to try abx. “a fine excuse to point a finger,” and “skeptic” are but the latest.

ThisIsMS members have branded me as stupid and an idiot on the cpn site. Several abx posters have repeatedly bragged about their high IQs on ThisIsMS—not explicity stated, but by implication, anyone who doesn’t decide to try anti-biotics is I guess pretty stupid, or, by implication, people who take abx are far superior to anyone who doesn’t pursue that choice.

Personally, I would hope that antibiotic users who have found positive results for themselves and for others would not let their personal enthusiasm lead to moral certainty. Both antibiotic treatment of MS and the connection to Cpn is highly experimental and theoretical-- as are autoimmune treatments despite their being "medically accepted." No one can predict whether anyone will improve on these or other treatments, and no one knows, if there is improvement, exactly why it is so. The results are empirical and anecdotal. I have said this repeatedly on the Cpn site and urged caution, for example, about interpreting survey and other results as if they are "scientific evidense" when they are not.

On the other hand, it is also true that people have a right to express their enthusiasm and their opinion, in the abstract, that it seems foolish to them not to try a treatment which has apparently little downside vs treatments pushed by neurologists which have large potential downside and little potential upside. The key here is that this is an expression of opinion in the abstract, and not a personal accusation of "you are stupid to not try it." If you feel personally offended by a general comment, then perhaps you are personalizing too much. If you are personally attacked and called names, I will take a stand for you against such misbehavior of others.

Equally offensive to me personally, and my personal reaction is one of feeling brutalized, are repeated assertions by several abx posters that anyone who might choose not to take abx is a) very happy to have MS and b) not interested in doing anything about it.

I for one am not particularly excited about participating in a message board where, as a member, I am repeatedly, explicitly or implicitly negatively regarded and labeled as a skeptical, stupid, idiot, happy to have been diagnosed with MS and with absolutely no interest in trying to better manage it. A skeptic I am, a stupid idiot, perhaps, but happy to have been diagnosed with MS and with absolutely no interest in trying to better manage it I am not. I experience those particular accusations, though not aimed at me directly, as emotionally cruel and abusive, very hurtful and stressful.

Sharon

Illness makes us tired, cranky, and not having energy to waste with which to put up with crap. I very much sympathize with your sentiments in that regard.

I'm not sure exactly to what posts you are referring here. I see ThisIsMS as a place with so many different discussions and subgroups that if one doesn't suit you, you can certainly find other areas. My hat's off to Aaron for his even handed management of an intelligent (all round) and sometimes contentious group of folks. Folks who have already stood up to a fairly suppressive medical system, and are not fond of hearing such from anyone else. I personally apologize to Aaron for any contribution I've made to making his job harder.

In regard to your concerns, Sharon, I want you to know that I support skepticism. I support asking questions and poking holes in places where we truly don't have knowledge. I support ThisIsMS as a place where all treatments for MS may be discussed and considered so people can make up their own minds. I refer people here all the time so that they don't just get a Cpn viewpoint, even though I have kindled that site. I even support people to decide not to get treatment of any kind, although it saddens me deeply.

Thanks for the space to respond.

Jim

Thank you for your thoughtful and considered response. There was no need for an apology IMO. I thought you asked an honest question and I tried to give an honest answer.

I admire and respect your dedication and hard work to develop a site dedicated to cpn with information specific to cpn and MS. I also admire and respect ThisIsMS and Arron's hard work and dedication moderating a motley crew. I also readily acknowledge my reaction is personal and I alone must take responsibility for managing it.

Sarah, the recommendation that I avoid the regimens and antibiotics threads is the third time that's been suggested to me. Maybe I should listen My reality though is that I am a person with MS, I am interested in educating myself about options, and that desire includes reading the regimens, antibiotics thread, and information on the cpn site. I believe I have a right to learn.

I also have a right to go to bed. Take care all.

Sharon

Sleep well.

Hello Sharon,

I only just noticed your reply, having been bogged down in mixing green acrylic so that it doesn't look dead. Sorry. Of course you aren't going to avoid the regimens and antibiotics threads because like me, you want to learn about everything. But also like me, you get very annoyed with things that people say sometimes. I guess that is something we will just have to live with.

When I first started wanting to post, I found this site to be a breath of fresh air and I posted only here and one an English site which I soon gave up. I was astonished with the views I came across elsewhere posted by people who were quite happy with their disease, and yes, in one case, even praised God for giving it to them. Here, though, Arron has done such a good job keeping the motley crew in order, never mind the tons of useful information that can be found through the home page. More recently Jim, who had been posting here because of the quality he found compared to some other places he had been wont to inhabit, suggested starting the CPn Help site. I declined his offer of being a moderator because I had so much lost time to make up with my painting. I suggested Marie Rhodes instead and I think she is doing a much better job than I ever would have done.

So, its not bedtime yet, but it is time for dinner, so please take care,

Sarah