Farewell
 

I have been absent from the board for the past month or so. I have decided that I will no longer participate in this particular forum. I have been here for the past 5 years fairly regularly. There were times in the past when I was a very active poster. In recent years, I have continued to be a “regular,” while not as active as many other “regulars.”

I have debated whether I should offer my reasons for leaving, and have decided that I want to say something about it. For me, the forum has changed. It now feels more like a “clique” than it has in the past. I don’t use that word in the full negative sense that if often is meant to convey. Yet, it does feel as if there is a kind of “in” group. I fell that I was part of that group in the past, and now feel very much on the outside and periphery. So, it may be that the forum has not really changed, but just my place in it. And that may have a lot to do with my posting activity. Clearly, when I was posting a lot more, I did not feel the way I do now.

I believe that there are some areas where I have considerable knowledge and skills, as a result of my professional career and personal life events. On a number of occasions, I have posted at length in these areas. Not only were my contributions not acknowledged, but in some cases, members were told by a “regular” which posters really knew the subject at hand. At times it appears as though these “recommendations” are made because of friendships rather than direct knowledge of the particular area. Oh – by the way – I should make it very clear that I am NOT at all talking about the computer-related discussions/arguments that had some high visibility for awhile. The issues that I am talking are directly relevant to folks with PN (not that computer usage is not, but I think you know what I mean).

A recent incident . . . a “regular” posted an off-base, out of context snide criticism . . . didn’t leave me any way to respond. I was surprised and disappointed by this immature attack.

I had really felt disconnected before these incidents and had basically decided to leave before the most recent event. So it is not fair to blame these things for my leaving. But overall I now just feel very disinclined to post. There are other specific incidents that were disturbing to me, and perhaps play some part in the way I feel. But none of them are the “cause” of my decision to leave. I do want to mention one other particular event. It happened about 6 months back. In a thread, a poster (infrequent member) wrote an anti-Semitic reply, out of the blue, and just stuck it in a thread. I was disgusted by the trash that was posted and immediately contacted a mod and filed a protest.

However, what was more disturbing to me was that a few of the “regulars” responded to the original thread as if nothing was wrong. In other words, they just kept posting while ignoring the anti-Semitic garbage. I remember discussing the whole incident over Chemar, who ended up as the mod in charge. She also expressed surprise about the continued posts by forum members. In any event, she quickly removed the offensive post. She also had to remove my reply, so a search will not turn up any record of the thread.

I want to wish every individual forum member nothing but good wishes for improving health as well as fun in life. I do not feel negative towards anyone here. And I hope that the forum continues to be active and that it meets the needs of those who participate. I have gotten quite a lot over the years, in terms of knowledge, advice, and support. I will always remember my being a member in this group as a positive thing that made some very significant contributions towards helping me find a healthier path in life.

At this point, I have no plans to participate in any other forum here. I will not remove my member name or profile – so that if anyone needs to contact me, they will be able to do so. I plan to be available, by private message, should someone need to seek me out for any reason.

rfinney

Gee Richard...
 

That's alot to think about. I am sorry you feel that way, I hope that my posts have not been offensive to you or anyone. I wish you wouldn't go,as I do find your expertise into psychology very insightful. And I beleive you also have helped many people.

I have also read remarks that at times I felt may have been better worded in another way... sort to speak. But I think just like anything there is a yin and a yang, and I try not to focus too much on unpleasant things.


I really wish you wouldn't go, but I wish you the best of luck and health ofcourse,and thank you for all your help.

Hi Richard! I do not post on the PN forum but I am a member of Neurotalk. I read your post and just wanted to send you well wishes! Take care!:)

I hear you, and I hope you will not
 

abandon those who do appreciate you.

I understand the sense of all that you say. - j

PS: Please lurk away?

Hi. I'm a newer person but just wanted to say I'm sorry your feeling the way you do. I know for myself I appreciate everyones views and help especially as a newer person to this and so confused.What I have learned is were all different and for many thing 1 view or treatment doesn't work so getting wide feedback is important. I too hope I have never offended anyone as well. On a side note I also hope that you don't loose out on the support you gain here because of a few people you find offensive. You deserve support and I'm sure when you give it and it helps others that makes you feel good about yourself. I may be wrong but I know it does that for me. Take care and I guess do what is best for you.

I agree with you. It is cliqueish. Thats the nature of the beast. People get to know each other or like some more than others and tend to interact with each other. As with most of these type of forums about physical and mental health, it is dominated by women. Its just a fact. Check out the number of posts by men as opposed to women. They also tend to feel more comfortable with each other. Ive seen some desperate people post and get one or two responses, while someone else with a relatively minor problem has gotten 3 pages worth of responses.

I have also seen that some people including myself at times are pretty much dismissed as not being a PN expert or carrying the weight of others. There is nothing like taking the time to answer someones often almost desperate question in which you have experience and have gained some knowledge in the many years you have had PN only for another poster to post later that dont worry someone that knows what they are talking about (expert) will be coming along later. Really gives you that warm fuzzy feeling. At times i have thought why do i bother? Ive only lived it and tested for it and read up on it and fought it and talked about it to everyone i come in contact with who has PN. What would i know.

I tend to keep my answers very short and try to get to the point and leave the half page answers for others. That may lead some people to consider me on the cold side, its just the way i approach this.

I for one am sorry to see you go, i have learned from many of your posts and think that you are a caring knowledgable person. IM not going anywhere but i have also disengaged to an extent for periods of time when i feel like an outsider.

Rfinnery, i have always found your posts interesting & informative, i am positive that your posts have helped many more than you even realize, it's very disappointing to read a farewell from you and i hope that in time you may reconsider.
take care mate,
Brian :)

The internet can be very different
 

than real life experiences.IMO.

I would like to discuss this with you, including some personal events.
But it is best to do that in email, since PMs have a limited size. I tried to
send you an email thru this board, but you have not activated that feature.

So I sent my private email to you in a PM. I hope to hear from you soon.

I'd also like to talk with you about this decision--if you're willing--
 

--and pretty much feel the way Brian does (my bias is that you would decide not to "go", and still post when you feel it is relevant).

There are times when even those of us who feel quite friendly with one another disagree and get into long and even heated arguments over some issue (both publicly on the boards and through private e-mails). Evnetually, though, most of these seem to die down and if they are not actually resolved, at least the principals seem to "agree to disagree".

I can't speak to the more personal nature of some of the repsonses that you seem to indicate played a part in all this, but I think even if such content was highly insulting, you would still stay and post when needed--you don't want to let the b*****ds win.

One thing that confuses me--you metion that you've been around for five years, but Neurotalk has been around only a little more than a year; are you including Braintalk time with that? And were the major incidents you refer to through this board only?

BTW, in response to Joe's post, yes, these boards can be a little "cliquey" (if that's a word), but I've found the bias is nto so much gender-related as articulation related. I've watched a number of boards at a number of forums, and each has a "particular" style that is "standard". At this one (and to a great extent at BT) this style could loosely be described as "informational", as opposed to "chatty". And this style requires a certain degree of writing skill and vocabulary to explain one's symptoms and medical history. People who post the way they might at other forums--with clipped writing, bad sentence structure, grammatical confusion, "instant message"-style wording, and the like--may get requests for more information from other posters, but they do not get the number of responses that the more articulate do.

This may mean the bias here is more intellecutual than anything else. (That doesn't mean there isn't humor, or some off-topic stuff--but even that tends to be written much more in "NY Times style" than "IM-style".) There are boards that are much less intellectual/technical--and sometimes I feel uncomfortable at those, given my penchant for long responses and medicalese (and my disdain for abbreviation--IM-style abbreviation, i.e, "cuz", "u", etc. is a big board and generational distinguisher). But, that's why the Internet is great--one can find a community that suits one.

For the record, I've never felt a gender bias here. In fact, given the nature of internet board posting, there are still a few people whose genders I don't even know, and that doesn't seem to affect the discussions much. Even when discussions drift into more female areas, I feel I can sometimes contribute--I have lived with one for 26 years, and observed.

Hi rfinney

I am rather puzzled by this thread to say the least:confused:

When you reported a bad post back in May of this year, I IMMEDIATELY took action and removed it. We have a full record of it and your reply on the admin forum archives. (The member who made that reported post last visited here in July)

No further posts have been reported or drawn to my attention and so I am not aware of any further incidents that may have upset you?

Life is full of cliques, and yes, people form friendships and groups everywhere.
But when I read this board I see many people all interacting with one another, whether they are in cliques or not. And cliques or no cliques, I see this forum active with much support and sharing of experience and information, with all free to contribute without exclusion.

If there is any form of "exclusivity" taking place that we are not aware of, then it needs to be reported to us, with specific posts cited so that we can look into it, and take steps to ensure that it isnt pervasive.
The admin/mod team is here to help, as I think we have shown time and time again, and certainly did when that "off" post was made back in May. It is up to members to contact us and let us know if there are issues that need our attention as we obviously cant read every post (or nuance) on all the boards here at NeuroTalk

and yes, NeuroTalk has only been in existence for one year, and so anything that may have preceded this really isnt something we have control over.

But we can assure all members that we take it very seriously when anyone does not feel welcome here, or has legitimate complaints.
As I am puzzled by what this upset is about, I am hoping that those who do have background may fill me in by private message please, as I really dont think it is fair to all the many caring members here, and also to newcomers, to have a discussion on the board that may single out other members or groups.

I am here to help in anyway I can. I hope you will reconsider your decision to leave rfinney. But if you choose to go, we wish you all the best.

Cheri

trolls...and how to handle them:
 

I was going to post this privately to rfinney. But I have decided to put it here
after all.
The internet contains a type of posting, that is designed to provoke reactions.
The best handling of this concept, I found at The Curezone, so I'll link to it here: http://curezone.com/forums/troll.asp
This is really the best discussion I have found on the net for this subject. And because CureZone is an alternative site, it is frequently attacked by trolling behaviors.

The suggestion for the net is to IGNORE posts/posters who inflame or provoke.
The behaviors that rfinney found confusing and which angered him, was the ignoring of the anti-semitic remark. In person, you may choose to confront someone who is behaving this way (if they don't look like they will attack you or have a weapon), but on the net, ignoring is the only way to not feed the troll. The troll wants a payoff, wants to see some kind of action. One must resist giving that payoff back. We can't see people here, hear their voices, we don't have a foundation at all about them really..they can even post pictures that are untrue. Basically on the net when people throw out comments like the antisemitic remark, it just leads to a flame war because it is very easy to type a response, something you may not do in person. Add on top of that people who are struggling with illness, pain, drug side effects, job insecurity, death, etc...and you have a low flash point.

So I recall this incident, and yes, I did not respond to it and waited for the moderators to take care of it. That is what they are here for.

So out of respect for this board, and others here, I don't respond. I do report to moderators, however.

rfinney, you are a respectful person. So it is hard to endure disrespect. But on the net, one has to weigh the total effect against the response. There will always be provocative people on the net, always.

I think the strength of this forum and others here at NT is built on diversity.
I don't enter into every thread either. Sometimes I have nothing to offer, or it is going well anyway, etc. Sometimes I miss something..overlook it. Alot of times I get no answers or response too. In fact, this board and the Vitamin one are the most responsive I have seen, for myself! I just got a PM about this phenomenon this week, from someone else! Sometimes a post is so good, and to the point, no response is really necessary. Sometimes people are just reading and thinking about it...they may think about it for days, weeks, months before it clicks for them! People have their own style.

So I am saddened every time I read posts like this---"I am leaving".
If you have to stop posting here, rfinney, then that is what you need to do.
Sometimes however, it is just a break from the internet which is needed. This I understand alot myself. So I hope it is only the "break" or vacation that is needed, and that we will see you still in the future.

Don't go Finney
 

I for one will be very sad to see you go. You are one of the people I look to for sanity when I seem to be losing all. There are people here that make up the ground home base of this forum and they are the ones that all of us with no real knowledge look to for help in time of need. I know when we were looking for the laptop to buy, I printed every word of your responses and advice and they were weighed carefully. They were not discarded as having no meaning. We did consider your word as an authority along with the help of others. But in the end, my husband who is a systems engineer, made the decision. I hope nothing I did contributed to you leaving. I sometimes answer before I really think and my mouth is the same way. I do so very much apologize if it is some of the problem. I really wish you would stay. You are family. But I will understand if you need to get away for awhile.
Best wishes and less pain,
Billye

I'm sorry you feel the need to leave, and hope that it
really is only a 'break' that you need.
As I am clueless to the problem posts mentioned,
I cannot respond to that- but I am sensitive
to anti-semitic remarks and feel that
they have no place.... anywhere.
I hope you will continue to 'lurk' and feel that
you can continue to post here.
I've been informed immensely over the years, by your expertise, knowledge and contributions- to us, who at one time, were 'newbies' & floundering in the sea of ignorance and mis-information about PN.
I'll be sorry to see you leave, but wish you well - and to be pain free.

Rafi,

I too will miss your intelligent, valuable contributions... and have to agreee with you - I dont feel this particiular forum is following its orginal purpose - to help those with PN - to inform new members - to talk about current issues, etc regarding medical care, treatments so on.... I've been a member of this group a long time too - and of course, certain members are known for certain knowledge.... what I've seen much of lately is that people cannot stand to be disagreed with, but will attack, be it on site or by snub - its destructive, misleading to new members, and keeps those who have valuable information to contribute from doing just that. We seem perhaps to be forgetting the purpose of a fourm - for all to contribute and have opinions (and no- they should not be derogatory of course towards any group etc.)

I dont think there is a bias towards women - I think we just talk more!

You are a valuable member, and I always looked forward to your posts... and will miss you..... this little "community" however seems to be getting smaller, at times unfeeling, and we are all suffering because of it, maybe I'm being optimistic that it will change again, most of our members are wonderful people and enjoy helping others, and new members I can only hope are earning as much as they can from others.... please take care - you are a special person.

As I read these responses,
 

I feel so blind. I tend to read everything, but I don't respond to the posts if I don't feel I have something to offer. I have to admit that I did not see the post Mrs. D and Finney are referring too. Nor do I see in this forum what Kmeb has referred to. I wonder how many of us are guilty of not seeing? Do we overlook it because it isn't something we can help or because we are afraid to face it. I never feel (when I examine myself) unfeeling, but sometimes I don't know what to say. I know in Karen's case, I simply had no answers. It wasn't that I didn't care. I personally love this little community we have. I think it is a careing group of people overall. There have been the rare posters that rubbed me a little, but they didn't stay. And some of us are so absorbed with our own health problems that maybe we don't sometimes see others. I probably have been guilty of that. I do so apologize for it if I've failed to respond when I should have.

Finney and Kmeb and any others, I hope I am not guilty of failing to see and respond. I will try to keep my eyes open and be more responsive. I really do care.

Billye

This is the problem with a thread like this. Everyone wonders if the person or persons are referring to them. If i caused anyone any consternation i apologize. No one has been rude to me and when they answer are helpful and encouraging. Between this and braintalk forums ive been posting for 4 years and many times i just feel that i dont fit in. I guess i ll have to find a dumbed down board (joking). What Rfinney wrote struck a chord with me and i wanted to tell him that he is not alone in feeling so.

attacks...????
 

I do see some strange humor at times here. But really compared to other places on the internet in the 10 yrs I have been doing this, this board has been
totally tame and considerate.

And I am still not going to put my picture up! So there!
I'd hate to think people are secretly sitting at their monitors and STEWING!

But when you are not feeling well, it's not hard to stew now and then, I guess:o

edit to add... you know last spring I was severely depressed with SAD...and it took several weeks to
get myself back. I must have missed more than I thought.

I would miss you. :( You have been generous with your support and expertise. I imagine that the five-years includes a portion of time on the board that crashed and resulted in this spin-off.

I have posted questions in recent years that have been ignored. This after many years of providing support to others (and gleaning a lot of great information for myself and dear ones in the process). When ignored, it hurt for a second, and then I reminded myself that no one had an answer or knew how to respond.

But these are things you already know. Just wanted to let you know I have appreciated you and hope not to lose touch with you.

rose

Hi Rafi:

I sent you a pm and you responded. Thanks much.

You take care of yourself and hopefully, you can re-join.

We need your wisdom and knowledge.

Take care,

Melody

........ well now
 

This tread caused me to FINALLY sign up here. I was on Brian Talk until it stopped working and some came here. I never signed up here but do read the forums.

I realize this is not dead on topic (to the original post) but - it will apply to some parts of the original post.

I have no beefs with anyone but ......

I jabber my face off on some forums that are not health related. I know a heck of a lot about some things but not medical related - other than just pure logic. If anything I am very logical.

I would like to give some of you ... long time posters a few observations from a guy that lost interest in trying to be very active here.

SOME (I did not say all) people ***may*** have some of the same thoughts.

- talking over our heads
- sometimes it seems talking over our heads is on purpose
- sometimes it seems to have a hidden meaning (shut up you know nothing - go away and come back after you have memorized all the medical terms)
- being short and sometimes dismissive to newbies.

I’ve had PN for 3.5 years. If I want someone talking over my head (on purpose) - I can go to the Dr. When a Dr is talking over my head on purpose or dismissive - it is a turn off and in no way impressive.

Using initials is fine for other more learned people (aka the few in the circle) but some of us not so up on the terms ...... it goes right over our heads.

I personally could care less if I am in or out of some circle on some internet forum.

Forums that are into “the few in the group” usually end up getting what they seem to be after. A smaller and smaller group.

It was mentioned in the original post (see I could have said in the OP but some would not have known what that meant) that .....

A newbie ask a question and it gets 2 or three replies. A regular (circle member) says something and it gets three pages of replies - YES YES YES ..... I see that over and over and over here.

AND ........... often one or two of the replies the newbie get is full of .....

- go to the Dr
- or has initials - leaving the newbie feeling stOOpid and often reeks with > “come back when you learn how to ask the right questions”.

While I admit - I don’t devote the time to all the medical jargon - I have followed both Brian Talk and this forum for about three years now. I have not posted on this forum for all the above reasons and the fact that ........

From all the reading I have done. From what I gathered from the testing that I did have. From what the neuro said - if there is no apparent cause of my PN ........ too bad.

I have no insurance and can not afford to chase an answer.

No one ask but - my bottom line (on the parts that caused me to say something) here is what I think. If anyone is really interested in not discouraging new members .......

- don’t talk over their heads and if you do - try to make sure they don’t think you did it on purpose.
- remember some of us don’t care about being in or out of some - group of accepted or not accepted but we do care about our PN and the PN of others - and get turned off by the perceived “grouping” real or imagined.

I personally never will be some kind of “expert” on anything medical related. I know tons about Apple computers - heavy users of them since 1981. Due to hundreds and hundreds of hours of personal development over the last 15 months - I can help people with things I have learned about self-confidence - self-esteem - motivation (I am listening to The Power Of Now - Eckhart Tolle right now) but .................. not medical. I have PN and it just seems ......... it is what it is.

Dang - I even bored myself with that post lol.

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?)

I hate to see those with medical backgrounds leave, although I don't often post there are several of you that have given me a wealth of knowledge to questions my physicians. I agree with glenntaj, maybe step back, but don't think for one minute your postings here aren't deeply appreciated, I have maybe been remiss in not acknowledging this. Stay please, and throw in your two cents worth and know that you have made a difference in someone's life.
Janna

Thanks rfinney (if you're still reading), I think your original post on this thread was kind of a spark for everyone to do a "check in" post so I feel I need to comment.

I have always gotten a lot out of the posts you've made. But I doubt I've read them all since I read this forum only 3 or 4 times per week and then only do spot checking for those topics I find most relevant (or funny).

I agree about the clickishness but I also believe that this clickishness is a result of those who post very frequently. I've chosen not to post frequently, I am really more of a lurker with a post now and then.

I accept that I won't be part of the click because I'm just not around that much. Yes, given my experience with supplements (I am not medical personnel however), I wish I had a little more credibility here because I think I could help with information more that I do but I realize the internet is a place where there is lots of bad information. Clickishness is a normal reaction in trying to develop a base of people to trust.

Unfortunately, I always thought your posts were articulate and interesting, so much so that I often didn't feel a need to respond but usually needed to go ponder them a bit (if I remember right). Then I was usually onto something else by that time so didn't go back to check. Guess I should do some more "thank you's" to those who take the time to post, especially when it is medically related which is really the reason I'm here, not for support.

I am not one who doesn't like things "over my head". I always like the challenge and that is one of the best ways I can monitor my doctors - when I take the time to learn more about the medical terms, etc. I will try to do better in the future, if only for a future rfinney that might show up.

I am female so I don't think the clickishness necessarily is gender related but then I'm a bit of a non-social type person off the internet as well so maybe I'm not a good example to use here.

Sorry you are leaving.

p.s. I really think those who post short posts are made (consistently) primarily by people who don't type fast. I'm not one of those obviously, LOL. (and internet dictionaries for these little acronyms are everywhere, I hope we don't discontinue their use, they are so helpful though a little clickish for people "in the know" I guess)

Anyway, I'm sorry you have been "stung" enough to leave. Thanks for taking the time to give me some feedback. I will definitely try to be better about acknowledging the information I find useful.

I do feel the need to reply here to say that there should never be a sense of "pressure" on any member to feel that they have to respond to all posts or else someone may get upset.

that just isnt the way that forums like these work.

sometimes people have the time, or the knowledge or the ability to respond and sometimes they dont. Either way that is ok. No one should ever be made to feel guilty for not replying to a post.

some have a wealth of info, research or educational and others just have an occasional hug or hello to post. Both are equally valuable. I dont think those who impart much knowledge or wisdom should feel intimidated now by concerns of posting "over people's heads" nor should those who post more simple responses feel they arent being intelligent or intellectual enough. There are a number of members here who truly do give freely of a wealth of info and their time and I find that admirable, and hope they wont feel uncomfortable to make such posts as they provide more help than to just the active members here....every day we have a large number of "guests" who visit these boards and who knows how many of them are helped by the supportive as well as the informative posts.

so, where I sure do understand the pro and con feelings that go with being part of any group, still, I hope everyone will also pat themselves on the back. You have shown time and time again that you are a very caring and helpful group of people. :grouphug:

Cheri

Thank you all for responding with your thoughts and feelings about my leaving and/or related issues that this thread has sparked. I have been aware that at least some of my posts have been valued by those who did not post their reaction. I am feeling a warming in my heart and have thoughts of gratitude for all the sentiments expressed.

I will be leaving as planned, however that doesn't mean I won't come back. As I indicated earlier, I have never felt unwelcome here in any way. I also said I would leave my contact info unchanged and that folks were always welcome to contact me. This was also my way of leaving the door open. While I need to follow my plans for now, I would not like to have make this break permanently. I do not know how my life and needs will develop . . . and I wouldn't have it any other way :) . . . and that means I might feel like returning again.

And given the somewhat unexpected outpouring of wishes frrom those wanting me to stay, that just pushes that door open even more. I would also say that I have taken a leave of absence from the board before. But it was a vacation that turned into other things and led to my absence. I did not want to just disappear and felt a strong need to communicate my intentions. I did not do the best job of such, especially in the beginning.

But hopefully things are at least a little clearer now. I would just clarify or re-state that my leaving is not due to ANY of the incidents, either by themselves or in combination, I or others have described. And it is not due to my being upset with one or more members of the group. When I have been upset with someone in the past, I would communicate directly with them and work it out as best as possible. To the best of my knowledge, there have been no hard feelings left over after talking to them. It is true for me, and if someone has a grudge against me, so be it. I have been aware of such feelings in the past, but I never, ever wanted to leave the forum because of that. Not very likely to happen that way.

I am very glad to hear that David is ok. He is one with whom I have always felt a bond . . . as I think most here would also experience. It is a great loss to the forum that he is not here more.

Curious: I am not sure if I get your post about Chemar. But I will try once again. The issue that came up had nothing at all to do with the "old board." And I have nothing but high praise for how she handled the whole situation. Some of the responses make me think that my posts are being perceived as somehow critical of her handling the situation. Nothing could be further from the truth. She did an exemplary job and I would commend her in the highest possible terms. I brought up our correspondence about the situation only to highlight what bothered me about the incident.

rfinney

To rfinney
 

Please don't leave. You are needed here.

Shirley H.

:Wave-Hello:hi rfinney,

i made that point because people were getting confused, (they pm'ed me), in your last post you said " After my first few years here, I came to enjoy my role." nt has only been here for 1 year.

:D we will all look forward to your posts when you return. i think those doors are nailed wide open. no chance they are going to close.

I just want to say that I have been reading and/or responding or asking questions on this forum for at least 6 months on a daily basis. My experience has been that everyone has been so helpful and nice! I have found a wealth of info and expertise here from a lot of people, and emotional support, too. I post when I have something to ask or add, and I just figured everyone else was the same. So THANK YOU to all of you nice people and all the knowlege and expertise you have shared with me. I have never felt ignored or treated badly and was never aware that anyone else was, either. So, I am nothing but positive. I hope if anyone has a problem with something I have done or said that they will speak with me about it directly. I think that is the best way to handle all problems. I feel frustrated with innuendos or non-specific statements, because I don't know who or what they are really directed at. But I have nothing but respect and affection for everyone here. Keep up the good work!

R Finney? Thank you!
 

It is a wake up call for ALL of us I do hope that we each learn from all others experiences. And I do know about the 'cliques' that occur, maybe there is some comfort in a long term familiarity. There is no need to 'explain' all that has gone before, and that in and of itself is comforting. This board and others have received a lot of publicity in the last few months and new folks are coming to US blind, not even knowing the terminology as to how to ask the questtions about their problems because the medical community hasn't explained it all well. IN reality? They are not prepared nor capable of explaining what we have, or go thru well at all.

What scares me more is the fact that a percentage of that medical community is incapable of recalling what they learned in 'Intro to Neuro-101' during their first year of med school.. Since I have learned [well, mind you-from you and others] many of the connections neuropathy issues have to other neuro issues, I have been able to 'tactfully' swing my 2x4 prior to surgeries...I mean HOW short can one make the connection of PN to other equally devastating demeyelinating conditions in less that 45 seconds? [The attention span of an anathesiologist...] That docs are capable of making connections -if one speaks 'sort of' their speak...is not only gratifying, it is lifesaving...especially my own.
..I truly feel that all you have taught me has been done well. While I might not have said 'thanks' for any given post....I sure have gone off on lots of very interesting tangets, be they related or not.

I have learned from you in a way in that any reference site I have posted has always appeared to have valid medical credentials...IF it's marginal, tho potentially useful I have made note of that fact.

I truly hope that you could continue to contribute here...you have lots of valuable insight to present here. I also hope that your own medical issues are improving rather than other options.. I Will think of you as I post in the future. My very true best to you whatever your decision...I think that lots, LOTS of folks have said it far better than I could ever try to do.
Super pain free moments to you good person! - j