We have no need of BT's "endorsement," just a group of people who want to give and receive support like yourselves.

If people want an alternative and more open forum to discuss their health and neurological issues, then so be it, we will make a new home here for folks who want to stay (and yes, we will change the name so we don't ruffle any BT feathers).

That's not to say there won't be any rules here -- every community needs some minimal guidelines. But if you spend a few minutes over at Psych Central's forums, you'll find we have very few problems with members because our team takes the time to understand issues before taking *any* action. And more often than not, it's just a simple PM to a member. It's amazing how, when you treat people with dignity and respect and spend a few moments with them, you can often help people better understand one another.

Best,
DocJohn

This is really needed. A site that at least keeps a couple of strands open for the type of discussion that could lead to improvements is not a bad thing. I think the problem comes when names are named. One can get their point across by discussing the problem without getting the personalities involved, especially when they are not around to defend themselves, although some really could care less about defending themselves because they are immune to being questioned.

As long as the discussion is limited to a place in forum feedback and the discussion doesn't out a person then open dicussion is a good thing. The forums where help is really needed need to be monitored. How that is done and how it is kept under control is not an easy task, but one that I am sure could be accomplished without banning unless what is going on is out of control. The concept of something out of control is not just accomplised in one post.

The problem always rears its ugly head when one poster doesn't agree and then works their way into making the other posters uneasy without really doing anything to be banned. Some people are extremely gifted when it comes to getting under other people's skin. That doesn't mean they should be banned just asked to back off with the threat of banning if they continue to pursue their agenda. I have worked with a website for the past 5 years that deals with helping others cope with a very difficult subject and there has never been a banning and there are around 20,000 people registered.

No I really don't see the need for this site to be kept. You said it was a temporary thing to help out John and would be temporary till Braintalk came back,

What has happened in such a short time for you now to decide you have the answer for which he has worked years to get to.

Is Braintalk perfect...........................no......... not by a long shot.

But it can be fixed.

And it is worth fixing.

I don't find your reasoning to be altogether factual as to your previous statements.

You have a good site so others tell me. Why is that not enough for you. Do you know something that you are not saying. I know the numbers look enticing to you but there won't be many more to make it worth your while to compete with John.

His personality and his true concept of caring and concern for all that are afflicted with neurological diseases and conditions is a rare commodity in this world.

He is still in there pitching his best and while he has been fooled by some he has never lost the concern for others.

Give him some slack and he will find his way clear to being the person we all cared about and respected for nigh on ten years or more now.

Sincerely

Thelma

John got to where he is by plain work and dedication and there is no respect to try and upsurp all that he has worked for.

I don't think it is being threatened by another site coming on line. It is just that this site said it was one thing and now it is heading in another direction.

If you read what 'doc' has said about the rules and regulations that will have to be implemented you can see that the volatile members [and we do have some] are not going to be welcome there for long.

As to the following

If you don't like it, don't join. But, don't deny others the right to do so, or make insulting insinuations because of the choices they make

Of course if I don't like it I will not join nor could I for one moment make anyone not join and neither would I like to influence them.

As to your 'insinuation' that I would follow up and insult them because of what they decide to do in their personal lives is too silly to respond to.


Now that is a good example of how these open chats can go wrong. I often wonder how we can change our methods of commnication but the fear I have is that in the normal context of what is written the true meanilng is lost. In this case it is because i was talking to another person. When it is taken into your life it changes content and results in the wrong impression being taken.

Hope you have an answer for this as i sure don't

Missed you around BT. I was in the hospital for a month and it took me awhile before I got back on my feet. So the last month there I am not aware of what went on.

Nice talking

Hi everyone,

I've been reading along forum feedback with interest, refraining from comment mostly because I haven't been able to formulate what my thoughts actually are. But, I'll attempt, at least in part~ and this response addresses a few things I've read on other threads as well.

I'm not placing a vote one way or the other on this particular vote because I don't have a strong feeling one way or the other. I have only minor concerns about BT that I'm hoping will improve, and that is in regard to the banning policy....which I think needs to be reconsidered. I'm not aware of most bannings, and there was just one that affected the forum I'm on that I felt was unfair. I think that overall communication needs to improve as well particularly in regard to this downtime. While the downtime has been difficult, I think the much greater difficulty was the lack of any updates. Hold tight? Move on? Getting word out is not that difficult, even without access to the front page of the forum. Look how quickly word of BT2 got out.

There was a time where BT moderators seemed almost too patient, letting things spin way out of control, and then more recently was a shift to banning sometimes without any warning at all.

I like what Doc John said~ "It's amazing how, when you treat people with dignity and respect and spend a few moments with them, you can often help people better understand one another." BINGO. This takes an investment of time, and it also takes a person gifted at doing so, but I believe Doc John is so right about this. Conflict isn't about winning or losing, but learning to understand and accept one another/ other points of view. Of course, some people are out just to cause trouble...and they may need to be banned.

We did have one member of the Gluten Sensitivity board banned without warning for a minor offense, by mentioning her newly opened gluten free bakery offered a discount to support groups with large orders (violation:selling). She had been a member of BrainTalk for a year or so, and we all eagerly anticipated the opening of her bakery. Nobody on the GS/CD forum had a problem with her post~ someone from another forum stumbled upon it and complained. A simple request asking her not to post about sales, discounts, etc, would have been all that was required, and I'm certain she would have complied with that request in the future. Instead, she was banned without warning, end of story, with no recourse. Many of us wrote emails of support, but again...we all must worry about ourselves being banned for doing so, and there really isn't any mechanism for appeal. Otherwise, our particular forum has been a happy place. I am not aware of most bannings or the circumstances thereof. I do believe if someone repeatedly and purposefully disrupts the forums, after several warnings...they should be banned.

I personally have no problem with this new board remaining open to meet the needs of some of the displaced (banned) or disgruntled BrainTalk members, and others who just think it seems like a great new place to be. I think it would be a great place, too, but I do have a certain loyalty to BrainTalk. Afterall, it is where I found answers to my family's many health problems. We all form our own opinions based on our individual experiences, and so far, mine have been mostly good at Braintalk. I understand that others may not be able to say the same.

Doc John originally opened this forum to fill a short term need until BT got back on its feet. Now a new need is showing itself from those previously banned at BT or unhappy with the management of BrainTalk. Again, he is stepping up to the plate and giving it consideration, and I don't see anything wrong with that. It's a big world...and there is room for many forums. It isn't a competition or stealing members or any of those things, IMO.

People are right when the say people want different things out of forums.

There are those who are there for one reason and one reason only...emotional support.

There are some who come in search of possible answers to their medical problems when they have dead ended in the doctor's office. That is where I was when I entered BrainTalk in Fall of 1999, and I did find answers for myself and my girl's thanks specifically to 4 or 5 BrainTalk members who gave me good leads and helped me put my family's puzzle together.

Then there are those standing by who have already found answers to their medical problems, and remain to spread the word so that others may find answers, too. This is where I am now. I'm happy and healthy, and want to spread the word about what I have learned that our doctor's aren't telling us. I believe those of us in this group are the ones accused of being egotistical or practicing medicine without a license, and I think that is a gross and unfair misrepresentation. I, and others, have explained a million times over that new posters post every day, and new lurkers are reading every day...and some important information that our doctor's are missing bears repeating over and over again for NEW READERS. Still, I have for the most part backed out of other forums except for very occasional visits, leaving a few posts in the Stickys, hoping that people will find them and stumble on over to the GS/CD if they want to know more. For every general gripe I hear about repetitive posting (not always targeted at me, but might as well be), I receive several thank you's. I guess that keeps me going because I am helping some people find answers to their health problems. I am sure not in this information business for the money I'm making :rolleyes: , and I promise you it is not to pump my ego. You'll have to take my word on that. People who have found answers to serious medical problems that were stumping the doctors, especially simple answers like diet and nutrition in some cases, become passionate about sharing this information...in hope it may be the answer for others as well. For those who are annoyed by repetitive posts (and I can understand that), there is the IGNORE function that may be used to block them.

Lastly, I suppose there are some who participate in forums mostly to entertain themselves by causing trouble, but they are miniscule in number.

In any case, I can appreciate we all land in these forums for related, yet still different or evolving needs. I can appreciate that our needs are even conflicting at times, for some. So, as far as I'm concerned... yet another forum is fine by me.

Thanks for listening. I guess this was my vent in the safety zone. I am heading off on vacation tomorrow night, and hope when I return a week later that the original BT might be up~ and that productive discussion may continue to evolve both here and there. People do need an opportunity to be heard or the resentment festers and lingers which is evidenced by the fact that some of bannings represented here occured years ago.

Cara (jcc)
(Who is in the awkward place of being one of the top posters at BrainTalk, and thus accused of ridiculous motives. I would vote to have the number of posts count eliminated, and let a join date, or BT member since year such and such, suffice. I do think it is nice to know whether someone has been around a long time, or is new to the community.)

thelma, you have been missed. in general i agree with you, and think you are showing a great deal of common sense.

one place i disagree with you, and that is about david. firehorse has been a member of the epilepsy forum thru a great many battles, and has show kindness thruout all of them. i don't always agree with him, well i don't always agree with anyone including my own self, but in general i definitely think he is one of the good guys.

he has been instrumental in getting the forum set up so that people with seizures are able to use it safely.

he is one of us in ways that no non disabled person can ever be.

i vote yes.

many of us know that the "powers that be" at bt1 join other forums to scout out the posts. admins and owners of boards and been threatened for mentioning ANYTHING about bt.

one of the big problems with having these hidden mods. they posted and befriended us. joined other boards we post on only to report back what we post. sick people imo. ( the mods )

bump, bump bump......

For me....it's much too soon to form my opinion. I'd like to see both boards played out for awhile and see who does what.

There has been very good feedback expressed here and I'm glad that this has been available. My trust levels are a bit shakey right now. The last thing I want to see is total freedom of speech with no rules. My emotions can't handle all the discord allowed here. It's been fine for awhile, but enough already!

I hope John Lester will read, absorb and act on the issues brought up here. Much of my decision will depend on both John Lester and Doc John as to what direction they intend to go.

My loyalty has always been to BT1 and John L. It will continue to be if he steps up to the plate and does what is right. I may wind up hanging with no home and that terrifies me, but so does opening every thread to an argument.

Sigh.......

I haven't been as active in BT1 as I used to be.

I've spent the majority of my time hanging out in the Child Neuro forum. Doing research. And praying. They don't really fight there.

I've seen the fights. And the stalkers. And the hackers. I don't like any of that. You have no idea who's reading your words on the other side of the computer monitor. And you have no idea what kind of shape they're in -- emotionally, physically, psychiatricly. I shudder to think of what kind of damage can be done because someone doesn't watch their words.

I have ONE reason why I don't want BT1 to continue with JL in any position: he doesn't have the time. AND, he doesn't seem to understand that BrainTalk CAN'T be at the bottom of the list -- after the "real job" and after the traveling and after the sleeping and after the flu. There are so many fragile people that got involved with BrainTalk originally. We **ALL** have to watch out for and take care of those that aren't as strong as us.

I like the idea of a mental health professional being in some capacity with the forums.

But, overall, I think this 'thing' has gotten so huge, that there needs to be professionals -- mental health professional(s), non-profit organization administrators, and perhaps physical health professional(s).

And maybe some sort of a "data miner". There is such a vast amount of information that's used by joe-six-pack, health professionals, and others. It's all been lost at least twice already. We can't afford to have that happen again.

This newest version of BrainTalk would be a wonderful time to get away from all our negative history -- all the bannings, the stalking, the fights, the typing-without-thinking, This can be a NEW BEGINNING.

I wish -- I truly wish -- that we could all see this and do this: take care of the fragile ones.

Barbara