Um, I found your post confusing, but that was probably just me because I am REALLY brain fogged tonight. Still, I'm going to try to offer a few thoughts.

I have found your replies to my posts, and indeed, most of the posts on this forum to be helpful. I'm still trying to learn about the whole neuropathy thing and due to cognitive dysfunction don't retain information well, so I do sometimes have to be told the same thing multiple times.

I do wish I could be more helpful myself, but my computer time is pretty limited due to pain and fatigue (and I'm sure most people here can relate to that). So even when I want to read all the new posts and chime in, I end up choosing just a few and replying only to those where I feel I can contribute something worthwhile.

On a side note that may be off your topic, in past years I actually did contact Oprah's show multiple times to try to convince her to do a piece on invisible chronic illnesses. They are not interested in anything that doesn't have a happy ending. And even though there are many many people in horrible pain that have done great things in their lives, the healthy world tends to see disabililty to be too much of a "downer" and something that of course will never happen to them.

Um, I'm not sure where I'm going with this. I'm still confused.

fanfaire

--could you clarify?

I don't think we're particularly "clubby"--all boards have some of that, but compared to others I think we're relatively accomodating.

There are times when I do feel I should tell some people--usually newbies--"slow down, tell us what's going on with you, what docs you've been to/tests you've had; we may be able to help but we have to get a clearer picture of what's going on". I don't say this on the boards generally, but may send such people a private message. Don't always know what perception that gives, but I think it's important in enabling the other members of the board to do their thing.

People who have trouble doing that--and I realize not everyone's equally computer savvy, or articulate (and I've written in the past that we may have a bias towards articulation ability) may not get as many, or as useful, responses, but I don't think that's due to any purposeful exclusionary desire; it's more due to being unsure what to say, or how to approach the post.

Does anything I've just written speak to anything you were trying to bring up?

Is this in response to an email that went out privately yesterday?

I am not going to respond to it...or tell who is doing it. It struck me as a bit childish, in fact.

By coincidence there is a good article that DocJohn has posted on the Health News forum:

http://neurotalk.psychcentral.com/sh...ad.php?t=31687
Read the whole article...it is interesting.

I have always thought this is a very nice forum. Compared to what I have been through on the net it is heaven--totally.

I agree with Joe--it's all within a person and how they handle what they can handle. I also agree there is always someone worse out there, someone I am glad I am not.

I am not sure I understand the original post either, you seem unhappy about something or maybe just airing some feelings. I, myself love this forum. I find info here I can trust. I talk with adults here, not teeny boppers who want to argue over every tiny, little thing. Some forums, there is so much wrong info, I want to scream. I private message people and send them here for good info. If we disagree here, we do it as adults and can still smile in the end.

I think we are all friends and sometimes I read, sometimes I post--somedays I see something that pretains to me, somedays I don't. Sometimes I speak of my pain, sometimes not. I have a very high treshold to pain and if I complain, I am asking for help and I never mean to make anyone uncomfortable, I apologize if I have.

sorry, but I do mean this hug. Deb

I am not exactly sure what you mean. I can only hope that somehow I have not contributed to your unhappiness with whatever is upsetting you on our forum.

I didn't get any kind of private email, so perhaps I have played a part in this. I don't know.

I do know it is extremely hard for me to cover all of the postings and respond, sometimes because I don't feel confident enough in my knowledge to make a comment, sometimes because I just don't have time to read and comment on everything that is posted.

I am sorry you are suffering so much, just as I am sorry for all who experience this malady we have been afflicted with. I have found the information you have posted and also sent to me to be very informative and helpful and have much appreciated the time you took to send it.

My wish for you today is that your pain is more tolerable and that you know that others here are thinking of you, and also appreciate your input even though they may not be posting responses to every posting you have made.

What I truly wish is that I had the magic potion or answer that could make all of our pain go away.

Cathie

J.,
I just PM'd you.
Get back to me, please

I really regret having to do this as I dont like to interfere in member discussions this way. But I am going to be locking this thread because it is in violation of our guidelines here.

I can see why members are confused here, as I am too.

The purpose of NeuroTalk is to be a self-help support community where members share their experience, knowledge and information freely with one another, in a supportive and caring atmosphere.

Making these kinds of posts, where things are alluded to that most of the members do not have a clue as to the meaning of........and then leaving people feeling like they have been chided for doing what...???

I am sorry but that is a form of flaming and we simply cannot allow it here.
I had no idea that this thread had started last night....no one has reported it, and so, because so many members have responded, and many more have read, I can see it would be futile to now pull it, which is certainly what I would have done had I seen the original post last night.

Joan, you are a valued member here as are all others. If something is bothering you, please come to me and let's see what can be done. But this kind of thread is just not going to solve anything, and instead just makes everyone feel lousy.

If anyone else needs to talk.........my PM and email boxes are always open

I would like to echo that I personally find this PN forum to be one of the best here at NT, and in my overall experience of online health forums. You blend support and caring with knowledge, research and personal experience and sharing into the kind of mix that makes self-help support forums work best. So my personal thank you to all of you...I think you are a great group

sooooo
let's get back to what the focus of this board should be............
thanks
Cheri