Ron:

You are very funny.

Melody

I read the forum very frequently, but seldom post. I only read the messages that appear to relate to my PN. I haven't notices messages which were rude to anyone. Some people post very frequently and discuss their life in detail. That doesn't interest me. I am here looking for information and possible solutions. Some of the posters do provide that.

I have been on several forums. All of them seem to have some humor and some sarcasm. That doesn't bother me. It is part of life.

I sure don't want to see Richard leave. Any chance you might change your mind, Richard? We certainly would miss you and your expertise on this forum. Like Billye, I don't always respond to posts, unless I think that I have something to offer.

Ooohhh. I am bad about abbreviating... Thanks for pointing this out, Ron... I will try my best to remember NOT to do that... I sure didn't mean to do that to exclude anyone, just was what I am used to using... Should have thought better....

Cathie

Well it appears that I erred in citing some specific incidents that upset me. I thought that it might help in understanding my reasons for leaving. But what has happened is that everyone is focusing on those specific events. The reality is that absent the 2 or 3 things I describe, I would still be leaving.

And to clarify further – I do not think that this forum is particularly negative or filled with people criticizing others. It appears to me that such things are relatively rare here. My leaving is selfish, in the sense that the forum just does not work for me at this point.

After my first few years here, I came to enjoy my role. I would often be the first to answer a newbie, or perhaps contribute thoughts about some PN-related topic. Or I would occasionally post about some new research or possible treatment. At times in the past, before the “big board crash,” I was very active. Over time, I minimized my participation, but would still have periods of a fair amount of activity.

As this progression moved on, I began feeling more and more on the “outside.” I think that this often happens on a board such as this. I would strongly state that in no way have I ever felt unwelcome or been the target of open criticism. Yet, I found that when I did post, that my response would often, perhaps usually, be ignored. Again, this is understandable, as many of new folks would have no idea of long-term status here and perhaps no way to gauge whether I even knew what the heck I was talking about.

So, in the absence of acknowledgement, it has just become unsatisfying to post. I well know as others have said that my posts may bring value to folks, whether or not there is any acknowledgement of such. For many years, that was enough. For reasons that are too complex and too personal to explain here, I find my participation to be unrewarding and personally unsatisfying.

I do believe that there are aspects of clique-ness, but as has been pointed out, that too is natural in a group such as this. I am glad that I am not the only one who has felt such things, but it is the way things are going to be in any online support group. I do think that the level of “in” versus “out” is much less here than at most others. I am sorry that I have decided to express my need to be helpful and supportive in other ways.

Yes, I will admit that there have been some occasions where I felt an “in” member told a newbie or other member which posters to have faith in, and that I was not one of them. In the past, when I posted a lot, if such a thing happened, I either didn’t notice or didn’t care. But now, when I take a lot of time to compose a post in an area in which I have specific expertise, and an “in” member points someone another way, it stings some. I don’t compose such responses all that much and so they stick out like a sore thumb.

So, please don’t go looking back to find where there “conflicts” are. You won’t find them. This is not about such things. And even absent the pointed disregard for some of my posts, it wouldn’t change a thing.

As for the anti-Semitic remark, it is not directly related to my leaving. It is not that I was so offended by the original remark that I am now traumatized. Chemar: I clearly indicated that you acted immediately to remove the post once I notified you. However, we did communicate afterwards, and you indicated you were quite surprised that no one else had reported it.

And that is all there really is to it. It bothered me some at the time, that is, the lack of a complaint (when I happened upon the remark, it was over 8 hours after it had been posted). Again, I should not have brought it up, as rather than helping anyone understand my reasons for leaving, it just muddied the waters. Please do not go back and try to find any of this. Any posts about this event were removed back when it occurred.

I hope that this has helped to explain things better than I did in my first post.

Richard
 

I am guilty myself of welcoming someone (a newbie),and then telling them that someone will arrive to help soon. I know I have done it on more than one occassion.

Why I have done it is, I hate when I see that a thread was viewed by many and did not receive a reply. I then take it upon myself to greet, just to offer a reply and hope that others who are more knowledgable about blood work and testing will arrive soon. I have been on the forum over 2 1/2 years and still don't know what a monoclonol antibody or other antibodies mean.

I also have had posts seemingly ignored or not responded too, and it doesn't feel that good.. you are right.

I realise that you have been unsatisfied with the forum.I want you to stay,and there are so many new members that need support and help. Even not so new members. I think that you will leave a void behind as your input is very valuable. I also think it is good that you were able to say how you feel finally,and not keep it inside any longer.

I hope that you realise that you are definately appreciated and wanted.

STAY!!!!

Aussie: You said: "I am guilty myself of welcoming someone (a newbie),and then telling them that someone will arrive to help soon. I know I have done it on more than one occassion."
------------------------------------------------------------------------

I do this all the time, only I never thought that we were not supposed to do that. For example, a person comes and posts for the first time, with so many symptoms and not enough information, so I say "welcome to our family, and don't worry, some more knowledgable person will pop us and help you, can you please give us a bit more infor, such as your age, family history, tests you have had done". etc. etc.

I never, for one minute, thought that this is not what is supposed to be done. I really thought that it's a nice thing to welcome someone (even if you can't immediately help them). I do not have the expertise of an Rfinny, Mrs. D, Rose or anyone else for that matter. What I do offer is my own experience with Methyl B-12, what dosage I take, and funny stories (I think we all need to laugh, it releases endorphins).

So if we are not supposed to welcome newbies, I wish someone would inform me of this. I always do this and I never once thought it was inappropriate protocol for a forum.

I host my own Asperger forum and when a new parent of an adult with Aspergers posts for the first time, one of my members always comes on board, welcomes them and says "stick around, Melody will respond, or one of our other moms and dad's will respond and help you out". See, I'm the resident expert on Aspergers on my own forum, but we have moms and dads who need help and support.

Now I'm really confused on what to do on these boards.

Melody

you are dong the right thing. welcome new members even if you don't have the answers. remember, many times new members forget to bookmark the site and never come back. (don't feel bad if they don't come back to fill in the blanks. it wasn't anything that was done or not done by members here)

i would also like to say again what chemar did...NeuroTalk has only been here for 1 year. issues from before that are from another board.

because a post doesn't get replies, doesn't mean it was ignored. take a look at the views. not everyone will have a reponse. that doesn't mean it wasn't a valued post. if you post a question that doesn't get a response, bump it back it back up. many times people need to think about a response before posting, and yes, it can get "forgotten".

another view
 

Richard--

I find I come and go. I've been on here for years, but think of myself as an occasional poster. Much of the time I just read to catch up on old friends---maybe that's a clique, butt there are people I feel more attached to (you're one of them) because they've been here so long and I feel history with them.

At other times, I come when I'm feeling unwell, in more pain, and then I might post my own update, but am sure to read other messages to offer up something. I try to not come on for myself without reading and offering something.

But I dont read as fully as I used to; I go days without coming here, and often respond to one part of a thread without reading it's entirety. For instance, I rad your original post here, and then skimmed through, skipped, and jumped to the end to say this. It's about time and internal energy.

There are folks I post to very infrequently, and folks I phone, which is often easier than coming online.

I don't expect to get here what I did when I was more critically ill, and I'm not looking for the same. But I think it's a natural evolution that people will bond with people who were there for them when they first came on, post to people they've connected with, and not read eveerything.

Maybe I'm wrong.

But I'd miss your posts, and don't think you should make a firm separation from us. Come back when things get hard; or come back when you're bored and don't know what to do with yourself. Come when insomnia strikes. You're always helpful, and no matter how rarely you are here, it will be important to somebody.

Best wishes for whatever choice you make.

Oh, and PS. I do speak with Wings, David, who used to post daily, or read daily, and is now more well and more occupied with his life. I was stunned to read the thread on California and see that NOBODY, nobody wondered what had happened to him, on the border of the Witch Fire in San Diego. I think it's because he, too, now comes and goes, but hasn't made a firm separation.

And anyone interested---he was on the edge of evacuation, very close to the fire, and only because of a wind shift was saved from leaving. His car was packed and ready to go with the cats and dog. But it worked out okay.

I have had some posts not responded too and I don't feel hurt I just try to say maybe no one knows. I have noticed on another forum that I am on for recovery that people get hurt feelings easily. I too I think am more on the sensitive side. I feel this is because many of us feel so lonely and confused so any reach out makes us feel better but when we don't we tend to look inward like what is wrong with us. It doesn't mean were wrong or disliked. There are many factors that could contribute. I'm newer and one of the younger here. I have always been amazed and how supportive and caring people are to me and make me feel part of the community. I often feel I ask dumb ?'s cause I have little knowledge. To be honest I didn't even know of pn before 9 months ago. In the other forum people leave with similar posts and I always hope there not running from feelings they don't want to feel. You have to face them to get past them. Also that there not hurting themselves by leaving because of the stupidity of others comments. If the choice to leave is to help themselves then that is another story and I hope if felt they wanted to come back they will. Life and issues change and so does the need for support. Ok that is my 2 cents.

I also don't post as much as I used to--
 

--although I read quite frequently.

My responses tend to be "seasonal". Given what I do for a living (test preparation), there are times of year when I'm working seven days a week, many hours a day, and I simply have less time to respond, although, if I do see a post that asks questions or wants feedback in areas that fall into my areas of expertise, I still try to respond to it. I have had situations, though, when I've seen something that falls into an area that I know something about, but I know others here know MORE about, and I think to myself that said people will notice the post and answer, and save me from being redundant.

Perhaps that is not the best thing to do all the time--it occurs to me that some may be looking for feedback as quickly as possible. I would certainly reconsider the practice if people feel in effect that makes it looks like posts are being ignored.

And Mel, I think what you do is absolutely the right thing. I do it too from time to time on other section of Neurotalk when somebody writes about something that I think may have to do with neuropathy, and I direct them here. And, of course, we have a whole New Member Introductions forum with a whole batch of people who spend a lot of time greeting newbies and directing them quite well.

It's true that a lot of us here know each other from Braintalk or other forums and sort of migrated here en masse after the breakdown there in the summer of 2006. But there are plenty of people here that to my knowledge were never at Braintalk, and they chime right in and are perfectly welcome. It seems to me that if that's a clique, it's a pretty inclusive one. I admit to being somewhat surprised when this thread brought up feelings/issues about that.

I can plead guilty to often speaking in complicated medicalese. But I do that purposefully, depending on the post. I think people need to know these terms in order to become well-educated about these conditions, and so hold their own with doctors who may not have the best communication skills. The terms are tools, designed to help make sense of it all, to help people know what doctors are talking about, and to help everyone make more informed decisions. They are certainly never MEANT as exclusionary jargon.

It's interesting that all these issues have come up in rfinney's "departure thread"--but I think it means that none of us want him to leave permanently. As many have mentioned, maybe a "vacation" is in order, but I will add to the chorus that says his contributions are always valuable to someone. As, indeed, are all of ours.

I do aoplogize for not thinking to ask Wings how things were going out there--I did have some impression that where he lives is not close to where the fires are, but that's no excuse, only geographical ignorance. (Rose, Kmeb, Daniella, you're not too near any of this, right?)