The coming clash? Shakeout? [Archive]

glenntaj

10-03-2006, 03:00 PM

Let's talk about the 800 pound gorillas in the rooms.

There is another forum that has been running for more than several weeks now, (tentatively) called Braintalk 2--which, in appearance and technical aspects, is very much like the "original" Braintalk.

Many people who felt "abandoned"/"adrift" by the long down time of Braintalk gravitated to Braintalk 2, doubtlessly feeling familiar with the format. There, they have attempted not only to refrom their community bonds but to resurrect the massive database that the original Braintalk contained. The latter aspect may be even more important than the former--Braintalk, as a health info source, was, before the outage, on a par with Emedicine or NIH.

One of the main sources of tension on the original Braintalk was the way the site was "managed"--moderation policies, perception of secretism and favoritism, perception of autocracy, questions as to how donations had been used. Given the length of the outage, these concerns, and discussions of them, have reached quite a pitch. (They are showing up here now, as well as on Braintalk 2 and other forums--but here slower and more haltingly, probably due to many feeling intimidated from speaking out on these very concerns and fearing reprisal.)

As a result, many at Braintalk 2 became determinded to foster a more democratic and open forum, with more transparent management. So far, it seems as if that has come to pass. Several decisions as to how that forum should be managed have been put to vote, and the board "founder" and moderators--who have all revealed themselves, and often were chosen by board members themselves--have communicated frequently, plainly, and publicly. This has made the contrasts between the two boards "styles" even more apparent.

JL has, in other threads, communicated his sorrow and frustration over the length of Braintalk's outage, and has given plausible reasons behind it, even admitting that his employment has left him with much less time to devote to Braintalk than previously--a fact that contributed to the length of the outage. Nevertheless, while indicating that he is open to suggestions as to how to improve the site, he has not, to my knowledge, yet answered the questions--some of which rise to the level of "charges"--as to why he left the board in a state in which such a long outage could occur, e.g., why, since he had become pretty much an absentee manager, he could not leave the board in other hands that could respond to technical or other problems more quickly.

In the end, JL is facing--not in all quarters, but in many--what is called in political circles a "crisis in confidence".

The resolution of this crisis--the willingness to answer questions, accept feedback, etc.--will go a long way towards determining what the future of Braintalk will be. It will also go a long way towards determining what the future of Braintalk 2 will be.

This is not to say the world doesn't have room for two such boards, but given the attentional abilities and time constraints of most people--not to mention those of people with neural issues--one is likely to become dominant.

My perception at this point: a viable option to Braintalk exists, but most would be willing to "come back" to the original, if the original can be made to feel like "home" again.

This puts the ball squarely in JL's court--he has the choice now to explain all, or not to. It has been suggested, in some other reaches of the Internet, that he might choose not to simply because he has several other more pressing priorities, such as other virtual communities, and does not at this point wish to invest much time in "managing" the atmosphere of the site (as opposed to managing its technical aspects--and it has also been said he might not even be that interested, at this point, in the latter).

In sum, many people may find even a full technical and archive restoration of Braintalk insufficient to keep them here; such people want more say into the conduct of a community they have come to call their own.

It has been suggested that JL may not have realized, given his absentee status, how deep resentment of the way the board was run had become. (It's also been suggested that sometimes "techie" people may be slower to realize how this can become an issue than others--but, again, only JL can respond to this.)

Many people have visions of what they want Braintalk to be. Perhaps the more pressing question is what JL now wants it to be, for that will have the biggest impact on what it does become.

Spiney

10-03-2006, 09:26 PM

I would like to think that this will be sorted out in time..........a short time :D

For those of us who have been around a while, this has been another unfortunate crash which has been a strain on many. I am glad it is over and we can begin to rebuild............or tear down. The choice is ours.

oh_snap

10-04-2006, 03:05 AM

:D I like it here. Get my hammer and nails: I'm for "rebuilding", or "adding on".

maridane

10-04-2006, 03:20 AM

and all I have to say to this is AMEN! I got my hammer out too..... :):D I like it here. Get my hammer and nails: I'm for "rebuilding", or "adding on".

Meg1

10-04-2006, 08:08 AM

Oh for Pete's sake. This is John's forum and he can run it any way he likes. If you want to post, post. If you don't, don't. Post at other forums if you like. This isn't a cult--you're free to transfer your allegiance at any time.

glenntaj

10-04-2006, 08:27 AM

The fact that many REALLY smart people with tremendous knowledge--and many with great research ability and large databases about conditions--gravitated here and posted their knowledge/research, made this board very different than most.

The database function of Braintalk, for many, was more important than even the community function. BT had become THE place for accurate neural related health information--and since so many things affect nerves, for accurate health info, period. The expertise here--diagnostic, therapeutic, etc.--rivaled that of any university faculty on Earth, not to mention any other database. I think this distinguishing characteristic made the board too valuable to apply the standards applied to most boards. There's a feeling, not only by me, that it required more responsible management, both technical and "atmospheric", than a "lesser" board would require; one couldn't just go to an "equivalent" board, as there were none really like this one.

I think that much of this board's future depends on whether the former data posts can be made available again. If they cannot, it's more likely that many of the people who built them will not bother to re-build them here, as they will feel there is no guarantee they can be preserved--and the board will lose what distinguished it from others, becoming primarily chatty.

There have been attempts at Braintalk 2 to rebuild the database, but it's a long, difficult process--and there's no certainty that all the people who contributed here will gravitate there.

So--the argument that much of the board's future depends both on database recovery and JL's communication about how the board will be administered from this point on still holds.

Kamie

10-04-2006, 11:02 AM

On Braintalk 2

Braintalk 2 was set up as a temporary place for people to go while this site was down. Doc John has said publiclly that the name of that place will be changing and that it will stay open. There is no reason for there to be a rivalry or animosity between the two places. They are run differently. Variety is the spice of life.

The internet is big enough for both places. Also, it is a benefit for everyone to have MULTIPLE places for people to get information. You should not put all your eggs in one basket. ;)

On The Database Issue

I too have a lot of questions about if we can get our old data back. I feel a lot of frustration because it WAS a lot of valuable information that is now *POOF* gone. That is frustrating and upsetting. And the question of do we have any guarantee that it will not happen in the future is a valid question. Glenn is right.

Moderators

I agree with Glenn on this one 100%.

Meg1

10-04-2006, 11:29 AM

Seems to me that glenn and Kamie are under the impression that John Lester owes them something and that they believe they can make demands on him or....or....well, just OR ELSE.

If you have a problem with the way the board is run, or with the possibility that the data here will one day be lost, then you need to either start your own board or develop your own system for managing and archiving the data you feel is important. Anyone who is not aware that internet data can disappear with the touch of a key is naive, and anyone who thinks he can depend on a free resource to archive and manage his own favorite posts is foolish.

This is your problem--not John's. Grow up.

glenntaj

10-04-2006, 12:04 PM

Meg1

10-04-2006, 12:22 PM

But, as regards impressions/promises made in the past, moral responsibility? I think so.

The people who used and built this board are not owed any future promises from its founders and maintainers. They are not even owed a promise of getting back all the data their hard work generated. But they ARE owed answers/explanations for all that has happened, and as to what form the board will now take--e.g., whether the data will be recoverd or not, how/if new back-up procedures will be in force, what the moderation policy will be, etc.

Only then can informed decisions be made by the community members.

If such answers/explanations are not forthcoming, or are not satisfactory to many, then of course many will "vote with their feet".

(The people who joined Braintalk agreed to a Terms of Service contract; but the "rules" and responsibilities--explicit and implied--do not flow only one way.)

LOL. Actually, the "rules and responsibilities" here do flow one way. Read the ToS--you agreed to all kinds of things, John agreed to nothing. If you want to use his forum, use it. If you don't like the way he runs things, go somewhere else. It's very, very simple.

Why you think you have some sort of "moral right" to satisfactory explanations or answers is beyond me. If you don't like what's happening here and John's explanations are not to your liking, find another site that will archive your posts, and those you like, for perpetuity, at no charge.

You remind me of a petulant child, stamping his feet, hands on hips, loudly demanding his much-deserved lollipop....from a stranger who was kind enough to give you a lemondrop yesterday. Thank the nice man and move on. That lollipop will never satisfy you.

Brookside

10-04-2006, 12:25 PM

So I moved back home to North Carolina.
Thanks John L:cool:

glenntaj

10-04-2006, 03:18 PM

--that your insistence "that no one owes anyone anything" idea would not be taken by anyone to its logical conclusion; if it is, civilization, which is based upon mutual obligations and norms of reciprocity (even if in many realms these are not legally enforceable) is certain to be lost. (Maybe it already is well on its way?)

I'm willing to go out on a limb and argue that Braintalk had a sort of "special status"--sort of the way the FCC used to treat broadcast licenses--in that, while technically anyone could go use any other forum any where they want, the sheer volume of data/info here made it primary source material. Such entities are not "replaceable" in the same way most "forums" would be. There is nowhere else, as far as I could discern, that people with limited time and often, capabilities, could come to get the most up-to-date "regular" and alternative medical info around. As I've been arguing, that status contributed far more to Braintalk's fame than the ability of people to communicate about their conditions--though the latter is important, that function can be accomplished through many other sites; the former function could not.

Now, of course, if we do not have access to the database, that may all change.

I think you misread me, Meg1. I have a long history on this board. I have never been banned, and only have occassionally protested some action that I perceived arbitrary. I am one of those compulsive researchers, and have generally stayed out of the frays that affected many of the boards--the ones I frequented tended to have few problems with flaming or spamming.
But as a considerable contributor to the massive database that is (was?) Braintalk, I have an investment in its status as a provider of information. I have linked to it, referred people to it, used info found here for other postings, etc. And due to the fact that this info has been unavailable for long periods over the last several years, I feel we have a right to know why that has been, if the data can be brought back, and if it can be protected from here on.

That is why I am watching, and waiting, and so are many others. The answers to these concerns will determine how many of us will stick around, and what effort we will put out. You may call that mercenary if it is to your liking, but from our vantage point it's more not wanting to be fooled again.

I've mentioned before that there seems to be at least some evidence that Braintalk is now way down in JL's list of priorities, and that's OK. But I hold we are entitled to better answers/explanations due to the reasoning above, and also for another reason--Braintalk is the original reason that JL has a considerable amount of fame in the on-line/virtual realm. Without BT, there would be no Brigadoon, and probably JL would not have the lucrative employment he now does. Having started this board was a major feather in his cap (as it would be in anyone's). But since we, the community of Braintalk, contributed to its, and his, fame as much as JL himself did (and Google it through if you need the evidence), one would think he would at least feel enough loyalty to this community to do right by it with full disclosure, even if he then said he had moved on and would no longer have it as a high priority anymore.

Perhaps I am not putting this as well as I should. There are several other threads here in Forum Feedback about apologies and such that may express this better.

SalpalSally

10-04-2006, 04:05 PM

I see that the usual flamers are back to attack your thoughts, Glenn. I'm sorry for that. IMHO, you have every right to question JL and the future of Braintalk.

Thank You.

Meg1

10-04-2006, 04:22 PM

I see that the usual flamers are back to attack your thoughts, Glenn. I'm sorry for that. IMHO, you have every right to question JL and the future of Braintalk.

Thank You.

Oh, yes. The famous strawman IT'S CENSORHIP! rant--employed whenever a poster lacks a suitable counterargument.

Please.

Who in the world said glenn didn't have the right to question JL and the future of Braintalk? Of course he has the right to question anything here (unless it violates the ToS, which it may). And I have a right to tell him his argument is illogical.

It always surprises me that those screaming about "rights to post" recognize those rights only in people with whom they agree.

Meg1

10-04-2006, 04:44 PM

glenn, you are free, of course, to expect anything and everything from John Lester but that doesn't mean you're going to get it. You need to recognize that you are approaching this issue from a position of great weakness. You have no cards to play. This is Lester's playground, he sets the rules and it's always been that way. His dime, his board.

The fact that you have apparently invested a lot of your intellectual and emotional energy, as well as your time, in this board is your issue, not his. What you seem to be proposing is some sort of membership organization with by-laws and mutual responsibilities and I feel sure that this is not going to happen. If this sort of arrangement exists anywhere on the internet, I've yet to hear about it. I can't imagine that anyone running a forum/message board/interactive site would ever agree to provide a guarantee of continued service--even for a healthy fee. If such a site exists, I'd love to hear about it. Anyone?

If, however, you are determined to pursue this quest of yours, I think you'd be well advised to come at it a little more meekly than you have. You seem to think you have some sort of moral right to John's time and efforts. You don't. His time, money and energy are his to share with us however he desires. If I was hoping to prevail on him to offer us even more of his talents, I believe I'd be smart enough not to do it by announcing a "coming clash." For what you are trying to do, you need to put your hat in your hand and politely and graciously make your request. Demanding something to which you have no right is just silly and ultimately futile.

glenntaj

10-04-2006, 05:59 PM

--but this is about as meekly as I can make the request. :) This is primarily due to the board's history--I feel, and many others apparently do also, that it's worth risking a "banning" or other sanction to air the issues.

I also think that if I or any others were banned for airing such issues, that almost proves the contention many are making about the management of the board having become arbitrary and capricious. Most other boards I have been a member of do not sanction for a legitimate airing of the board's practices.

I certainly can't dispute this:

"You need to recognize that you are approaching this issue from a position of great weakness. You have no cards to play. This is Lester's playground, he sets the rules and it's always been that way. His dime, his board."

I would only hope he be aware of what Braintalk had become, how the contributions of members mightily contributed to what it had become, how what it had become certainly has helped him (and his dime) in the on-line realm, and that as a result he would be respectful enough of the board's membership to be forthcoming with responses to any reasonable request.
I don't think any request made by myself, or Liza Jane, or numerous others, has been unreasonable.

JL can choose to answer or not--many of us suspect he won't simply because this board is not important to him anymore. Many of the issues may need to be taken up with the moderators or other administrators who do have day-to-day contact here (if that is possible).

While I agree that few boards would promise uninterrupted service/access/backup of archives, there are a number of sites, fee and non-fee, that approximate a cooperative, "with by-laws and mutual responsibilities"--in fact, BT2 is attempting to become such an approximation. Another site I know of that approximates this is the National Peripheral Neuropathy Conference. Among other areas I am familiar with, the Ultramarathonworld.com forums are run along such cooperative lines. I am sure we can come up with others--a new Internet model, to be sure, but one that does exist. I'm not saying Braintalk will go that direction--I also doubt that very much--but such a direction is possible, and in many ways, desireable.

I don't feel flamed--your points are certainly supportable. I still think, though, for the sake of the many who have been here, and the sake of many possibly to come, the issue of the nature of the board now--its archives, its data, its ability to be backed-up, its administration--should be discussed. I will still urge JL, and anyone else, to join the discussion, realizing there's nothing I can do to force it--I can only appeal to people's better sensibilities (though I'm not above attempting a little old fashioned Jewish guilt trip).

loisba

10-04-2006, 11:11 PM

I've read through this thread with interest. I discovered BT about a year ago, so missed the last big crash before this one. I have greatly enjoyed BT, and agree that JL can run it any way he wants to, and that anyone is free to post or not, as they please. (Assuming they are not someone who has been banned, of course! :D )
All that said, a forum is a community. And a community is made up of members. The members have been set adrift, and many feel abandoned. They may choose not to come back without some reassurances. That is, of course, their right, as it is JL's right to give, or withhold said reassurances. But the community will not regrow without the members' support. Many are, I think, like me, posting in both forums, and adopting a wait and see attitude.
Yes, JL has a perfect right to not address these concerns, he also has a right to do so. I hope he chooses to do so, since, right now, to me, at any rate, BT2 feels more like home than BT.

raven

10-05-2006, 12:06 AM

wow. Many of the issues you raise, glenn are the very issues that caused me to take a long vacation from this forum. I quit posting here back in march or so. This summer, I decided to pay a visit, and found that the forum was down. It had been down for almost a month at that point.I will check out braintalk2. The secrecy, the autocracy, and the apparent lack of accountability of moderators is of grave concern to me. I stopped posting here shortly after I discovered a moderator had re-instated a post that I had deleted. I understand that posts sometimes need to be or deserve to be deleted. But to override a person's decision to remove their words from a thread is something I couldn't countenance. The only control I have is whether to submit the reply -- once beyond that point, it's in a faceless moderator's hands should they choose.And with that, I will submit the reply :(

raven

10-05-2006, 12:35 AM

Fare thee well John Lester.Fare thee well, David Hosibuchi.

boats

10-05-2006, 12:40 AM

Every successful organization got that way by providing some unique value (great product and service with a smile). This forum's unique edge is (was) the database. If the history can't be recovered . . . . . . . . .

Linda25

10-05-2006, 05:59 PM

Glenntag - It's one thing to air one's opinion - I believe we all get a chance to do that here, and on the past BT too

It's another to keep griping about your personal agenda, bringing the same issues up repeatedly, and trying to force your opinions down people's throats

let's get on with it and stop whining about the past already

It's very unfortunate that data has been lost (apparently - I don't know if that is the final status) - but to continue to complain about this point is a total waste of time.

We KNOW you're unhappy.

Linda25

glenntaj

10-05-2006, 06:32 PM

--because I, and countless others, did a lot of very hard work to accumulate and post a good deal of information.

Little Mischief on BT2 expressed good sentiments regarding this--she said that she could afford to be calm and reasoned in her postings, but if she had done as much work on the database as I and others had done, she'd be unhappy too. In fact this thread would be very instructive to read for all those who want to know where a lot of us are coming from, and why we are cautious:

http://forums.braintalk2.org/showthread.php?p=19970#post19970

It's not that this info, given time, could not be resurrected--attempts are being made at BT2, and NPNC, among other spots--but still, the major difference between Braintalk and other boards was the thoroughness of the database, and given Braintalk's fame, people still tend to gravitate here to find comprehensive info in one place.

Perhaps that will change in the future-- but my intent is to exhort, in so far as is possible, that all be done to reconstitute that data. I think that is as high a priority as getting these boards and chatroom working again (if not higher). If it turns out that it can't be done, then we'll move on--but we don't know yet if it can, and JL has not told of us of any progress, or lack of progress, in that regard.

boats

10-05-2006, 06:37 PM

glenntaj's posts are reasonable in tone. Why the strident response?

glenntaj

10-05-2006, 06:45 PM

A number of people have been posting that JL doesn't owe us anything--explanations, input, whatever--and that we should be thankful the board is at least back up, and stop whining as if we feel "entitled".

I disagree, and I feel a lot of people here would also disagree.

As I've said--part of it is being a mensch--a stand up guy, for those not familiar with Yiddish. But the other part is recognizing the community's part in building Braintalk. Yes, JL created it, but it became the great thing it was due to the people who posted on it, who built the database, etc. AND--JL recognized many benefits from this work. As I've said, without Braintalk, there would be no Brigadoon, not nearly as much fame for JL, probably not such a lucrative job and/or other lucrative offers for him. Irrespective of one's feelings about moderation, management, donations . . . that ALONE should produce the same feelings of gratitude and respect towards us that we have had towards JL, and that ALONE means we deserve good, timely communications and thorough explanations.

Of course, no one can force anyone to do anything. But if wanting to know what happened, and what will happen, and what's being done behind the scenes to make it happen, is considered entitlement, I'll plead guilty--I think we are entitled to know.

(I've noticed not everybody, even every board creator/manager, thinks this is an outlandish request. And some invite members to have a say in setting the rules, as well:

http://forums.braintalk2.org/showthread.php?t=1481)

Paula

10-05-2006, 07:14 PM

LOL. Actually, the "rules and responsibilities" here do flow one way. Read the ToS--you agreed to all kinds of things, John agreed to nothing. If you want to use his forum, use it. If you don't like the way he runs things, go somewhere else. It's very, very simple.

Why you think you have some sort of "moral right" to satisfactory explanations or answers is beyond me. If you don't like what's happening here and John's explanations are not to your liking, find another site that will archive your posts, and those you like, for perpetuity, at no charge.

You remind me of a petulant child, stamping his feet, hands on hips, loudly demanding his much-deserved lollipop....from a stranger who was kind enough to give you a lemondrop yesterday. Thank the nice man and move on. That lollipop will never satisfy you.

Either try to understand another's opinion without judging it according to your standards or move on to another thread - perhaps anger management forum. Your comments are the aggravating ones to read and your last paragraph is purely insulting.

paula

mmcc53

10-05-2006, 10:34 PM

Either try to understand another's opinion without judging it according to your standards or move on to another thread - perhaps anger management forum. Your comments are the aggravating ones to read and your last paragraph is purely insulting.

paulaI totally agree with meg1's posting. What standards would you judge a post on except your own?

Someone mentioned being a "mensch" I think what is important is to stand up for those who have helped you and treated you right, and also for what IS right. All opinions are not "equal." That is modern day nonsense, or would you support the idea that "the world is flat" deserves equal standing with "the world is a globe?"

I have yet to find a forum whose TOS are exactly what I would create were it my forum, but I don't have the time, knowledge, or energy to create and run a forum, nor the altruism.

I withdrew my membership from two other forums including the forum choosing to imitate this one because I don't like the TOS. Everyone here is free to do the same.

I find it hard to believe that people who found the "database" so important didn't bookmark articles themselves. And it was obvious that most people didn't look at past postings, otherwise the same questions would not have been posted month after month.

There was not a single scientfic article posted BT which cannot be found by a Google or other search. The debates between were interesting, but hardly critical to the survival of society as we know it.

Spiney

10-05-2006, 10:59 PM

If I found this site and its management so distasteful and unfair, I would pack my bags and move on down the road. Forgive me for being so blunt but I am confused as to why one would chose to stay on a site that was causing so much discomfort. I just don't understand.

southernlady

10-05-2006, 11:10 PM

Linda25

10-05-2006, 11:24 PM

"There was not a single scientfic article posted BT which cannot be found by a Google or other search. The debates between were interesting, but hardly critical to the survival of society as we know it."

Well said - plus medicine and science are constantly being updated- some of the old information WAS out of date - if someone needs to find out about a topic and really can't find it on their own, I'm sure there are plenty of generous folks here on BT who would be happy to help out.

This is a community of support and it is important that we learn to work together, not fan flames of discontent when it doesn't really serve any good purpose.

Linda25

pam

10-05-2006, 11:38 PM

Spiney, I was JUST coming to post the same thing...

If they don't like the place, don't let the door hit them in the rear as they leave!

They've whined long enough, stop the whining like little children and get over it. Liz

Do I like this place ? yeah, for the most part I do and I have been a part of it for a long long time. I am in no way ungrateful for the forum, for the time JL has put in here, and mostly for the people who have made this community what it is.

I have however seen some things change in the last year that have caused this community to struggle. I have noticed people disappear and I have noticed a lack of trust among some who remained here. It wasnt extremely obvious, but it was there.

John said he was open to feedback and suggestions and I see people making suggestions. I dont think they are doing that because they want to hurt his feelings or because they want to be mean, I think it is because they care enough to want to fix a few things that got broken. That is my reason for speaking up anyway, I cant really speak for anyone else.

I have 4 kids and at various times in their lives there have been things they have done that I didnt particularly care for. Some of those things were pretty serious and took alot of time to work out, but we did work it out. It would have been much easier to just walk away and not let the door hit me in the rear, but you just dont do that if you really care enough about something.

southernlady

10-05-2006, 11:53 PM

open to feedback and suggestions

But that does NOT mean he has to impliment the feedback and suggestions. OR even give the members an explanation why. A forum is not a democracy. It is, bottom line a benevolent autocracy. Someone HAS to be the owner.

I think it is because they care enough to want to fix a few things that got broken.

I never saw it as broken but then again, I am a fellow forum owner who has run my own server and understand the headaches.

And have you really read the tone of some of these posts? These people are whining (not feedback but whining). Liz

pam

10-06-2006, 12:45 AM

Liz,
When I saw Johns post saying he was open to feedback and suggestions, I was definitely aware that he had no obligation to impliment any of the suggestions that were made or even to reply. In all honesty I did not expect a reply, but I did hope for one.
I have actually read most if not all of the posts on this subject and I haven't seen them as whining. I guess everyone's perspective is different.

I dont think I can add anything that hasn't already been said so i'll drop the subject and see what happens from here.

Have a good night.
Pam

southernlady

10-06-2006, 12:49 AM

Pam, MANY people think that a forum owner/admin HAS to implimate the feedback/suggestions made by members. You obviously are not one of them. He may still respond but as he mentioned in one post, he does not have much free time.

You have a good night too. Liz

Kamie

10-06-2006, 12:50 AM

Instead of yelling at each other and flaming each other for our opinions, why not brainstorm ways to help preserve future data so it can be spared in the event of a crash?

That would be more productive than flaming each other and beating a dead horse.

southernlady

10-06-2006, 12:56 AM

Kamie, that makes good logical sense.

I know I have space on my server for a back up of data if he wants to place it there. And can give him or his other admin access.

One thing that might help, since he mentioned a colo is to have a tech admin on board. I know *I* have one :) He answers the questions that I can't and does the things on the server that I can't but he has a vested interest, he has a forum on the same server too :) We share a VPS.

Anyone else have other ideas? Liz

Paula

10-06-2006, 01:16 AM

yes I suggest along the same line as Kame- leave your judgements of other people's feelings and thoughts alone and stop talking for John. Talk TO him and let everyone have their say. Let him decide what is possible or what isn't.

mmcc53 - i understand your point, until it crosses the line into name calling and insults. It wasn't even what was said, it was how it was said.

paula

aklap

10-06-2006, 01:31 AM

I find it hard to believe that people who found the "database" so important didn't bookmark articles themselves. And it was obvious that most people didn't look at past postings, otherwise the same questions would not have been posted month after month.

MMCC,

Speaking as a person that was saved by the information posted here and has since helped expand it - YES a group of us have kept copies of much of the RAW information we tracked down & brought here. We learned to keep backups due to the number of times we had to rebuild it in the past. The raw info we can reconstruct, albeit with a lot of work. Please understand, we had thousands of links and articles amassed in our "database". We constantly refer new members and old members to relevant pieces of information in our collection. Dare I say, a collection that existed no where else in the world!

What we CAN NOT reconstruct is the conversation and personal stories that was shared around that raw information.

There was not a single scientfic article posted BT which cannot be found by a Google or other search. The debates between were interesting, but hardly critical to the survival of society as we know it.

You are 100% correct in your statement that all the articles can be found by Google. The same argument can be said for encyclopedias (http://www.answers.com/encyclopedia&r=67). All the information printed in a set of those books can simply be found elsewhere, right? So why bother? How long do you think it'd take you to assemble the information you might need? While you're it, add to the equation that you are sick & tired of being sick & tired. You have brainfog so bad that it takes all you have just to read the information - to say nothing about understanding it. We collect, analyze and interpret this information in order to make it easier for those that are looking for answers. Why? because we were in their shoes know what it's like.

I don't know what brought you to BT, but please don't be so quick to dismiss the "data" that has the power to save peoples lives!

Meg1

10-06-2006, 08:43 AM

You are 100% correct in your statement that all the articles can be found by Google. The same argument can be said for encyclopedias (http://www.answers.com/encyclopedia&r=67). All the information printed in a set of those books can simply be found elsewhere, right? So why bother?

You may not realize, aklap, that you have inadvertently made mmcc53's point. Encyclopedias are the dinosaurs of the information industry. My children's school library doesn't even stock them any more and hasn't for years--they're out of date pretty much the minute they're published and there are many better sources of information available at one's fingertips.

aklap

10-06-2006, 09:48 AM

jcc

10-06-2006, 10:36 AM

Yep...we kept a LIVING dinosaur in this century :D.

aklap

10-06-2006, 10:39 AM

Yep...we kept a LIVING dinosaur in this century :D.
And a darn big dino at that!!

Meg1

10-06-2006, 11:01 AM

The point I am trying to make is that all this information is gathered in one place. We constantly update the research and information we post. Our group at BT maybe unique in how we function, but out of date information for us will make us sick, so we tend to keep it up to date. We offer data & research as well as support. Support comes in different forms. Why is it that people have issue with those of us that use data to back up our support?

LOL. Well, that's an interesting strawman. So you think that those of us who are questioning your sense of entitlement really just "have issue (sic) with those of us who use data to back up support"? Not sure where in the world that came from.

Focus. This isn't about you and your old posts. This is about a monumental technical problem that you believe you have a right to demand be solved. You don't. Like you, I hope John is ultimately able to restore what was lost but he owes me nothing. All of us here have gotten infinitely more from him than we'll ever give back to him.

If your interest is really in support of those who are ill and maintaining BT as a repository of knowledge, start googling all that info that was lost and post it on the appropriate page. Include commentary with your posts. Don't forget to save a copy of everything you believe is important. Do that for years and you'll soon realize the costs of archiving all this information and perhaps be more symptathetic to John's current problem.

*Joy*

10-06-2006, 12:10 PM

I see this crash as an opportunity to rebuild our community not rip it apart or make demands of others.

The crash certainly wasn't welcomed by anyone, including John Lester. I'm grateful to John for his foresight and his imagination in realizing the need for Braintalk and for all his years of hard work and dedication to BT.

Yup, I'm going to cut John some slack.

For those of you who are complaining about the database - won't you look silly when it reappears. Have a little faith. And if it doesn't reappear - well, let's start to rebuild it. Slowly. And joyfully.

It's another day, folks. Let the bitterness go. Not a single one of us is entitled to anything from John. No one. Not even those who feel they single-handedly built this site.

And thank you Southern Lady for offering your site as database storage. At least you are thinking 'solutions'.

And to those who keep bringing up the copycat BT2? It's a copycat and it will never be the real Braintalk but if you like it there, you like the creator, the moderators and the TOS rules -- then go there and stay and stop beating John over the head with your nifty little club of words.

Gimpy

10-06-2006, 12:46 PM

zzzzzzzzzzzzzzzzzzz.................. zzzzzzzzzzzzzzzzzz.................. zzzzzzzzzzzzzzzzzzz.................. zzzzzzzzzzzzzzzzzzzzz........ zzzzzz....

PwMS

10-06-2006, 12:50 PM

John said he was open to feedback and suggestions and I see people making suggestions. I dont think they are doing that because they want to hurt his feelings or because they want to be mean, I think it is because they care enough to want to fix a few things that got broken.

i agree. so we are on page 5 of this topic with no reply from the mods or john. will any of our suggestions really be considered?

my main suggestion is if in the future bt goes down can weekly status reports be provided when we click on the link here? that alone would eliminate a lot of stress, just to know it will be coming back ... nothing lengthy, but at least a weekly update would be considerate and appreciated.

mods? john? are you reading this thread? a simple reply would be appreciated, especially since john said he was open to feedback.

*Joy*

10-06-2006, 01:04 PM

zzzzzzzzzzzzzzzzzzz.................. zzzzzzzzzzzzzzzzzz.................. zzzzzzzzzzzzzzzzzzz.................. zzzzzzzzzzzzzzzzzzzzz........ zzzzzz....

Hi Gimpy,

Was this for me? LOL! I didn't know I was this boring.

I'll take this as constructive critism,

Joy

Gimpy

10-06-2006, 01:21 PM

No, it wasn't to anyone particular. It's for the topic in general.

southernlady

10-06-2006, 01:27 PM

mods? john? are you reading this thread? a simple reply would be appreciated, especially since john said he was open to feedback

If you click on *view forum leaders* at the bottom of the page, you will realize that no, right now, none of them are reading this. That may change by the time you look tho.(Not a single one was online when *I* looked)

Maybe they are all at work? Maybe JL is out earning a living, putting money in his pocket the hard way to keep his family fed/housed, AND to help pay the expenses here?

To put a little persective here. A T1 colo typically starts at $350+ a month. What is a colo you may ask? The server itself is owned by the customer, who is responsible for all parts of it, from the hardware to the operating system. Rack space and bandwidth are leased from the hosting company, and their responsibility is solely the connection to the Internet and related matters. You will be completely responsible for everything in your box (server), hardware and software included. Assistance may be available, though it is often in the range of $200 hourly, and may not be available immediately, leaving your server and sites inoperative for a time.

Add the cost OF the servers, the cost of the operating system to put on there (which has to be updated and if you use Red Hat Linux, updating isn't always free. On the other side, most of the other software to run and secure a server in a linux enviornment IS free.

Then you have the cost of vbulletin. The initial cost of flashchat (not much in the grand scheme of things).

THEN there is the day to day maintanence. This summer, most forums were hit with a plethora of spammers. We think the script kiddies were out of school and BORED! In one day, *I* deleted 15 off MY forum. And banned them but before I did, I had to make sure each and every one wasn't a legitiment signup.

99.9% of the forums out there not only have email verification but visual verification just because of the spammers.

Like someone else said, rather than whine and complain, OFFER ways to make this work.

As far as the mods being *invisible*, they have been that way since day one on the MGH side of the house. I do not see that one changing so I guess you can accept it or get over it but I suspect they are TIRED of hearing about it. Liz

aklap

10-06-2006, 09:08 PM

LOL. Well, that's an interesting strawman. So you think that those of us who are questioning your sense of entitlement really just "have issue (sic) with those of us who use data to back up support"? Not sure where in the world that came from.

Uhhhh just to refresh your short memory...

I find it hard to believe that people who found the "database" so important didn't bookmark articles themselves. And it was obvious that most people didn't look at past postings, otherwise the same questions would not have been posted month after month.

This is not the 1st time I've seen a sentiment like this.

Focus. This isn't about you and your old posts. This is about a monumental technical problem that you believe you have a right to demand be solved.

Boy, you are good, you even know my intentions of why I posted.:rolleyes: You somehow got the impression that I feel "entitled" to certain things. I'd like to know WHERE in this thread I said anything about "demanding the data be restored" or even hinted at entitlement? Would I like it back - sure. Do I expect it back - not really. Will I be happy if it is restored - greatly. Will I be devastated if it's lost - no.

If your interest is really in support of those who are ill and maintaining BT as a repository of knowledge, start googling all that info that was lost and post it on the appropriate page. Include commentary with your posts. Don't forget to save a copy of everything you believe is important. Do that for years and you'll soon realize the costs of archiving all this information and perhaps be more symptathetic to John's current problem.

Yes, my interest does lie in helping others [unlike others I've run across at Braintalk]. If you had fully read and comprehended my previous comment you would've known that we have and do back up our own data. We've rebuilt after each crash [oh, and one exodus from MGH]. It shall be no different this time. This rebuild started shortly after the last incident in July.

"Do that for years and you'll soon realize the costs of archiving all this information and perhaps be more symptathetic [sic] to John's current problem."

As a matter of fact, we have been at this for years. Currently cost of storage is cheap [< 1.00 per gig] so finding room won't be a problem for the next outage that will occur.

Did I ever say I wasn't sympathetic? It could be from my lack of focus, but I don't remember making such a comment.

PwMS

10-06-2006, 10:04 PM

If you click on *view forum leaders* at the bottom of the page, you will realize that no, right now, none of them are reading this. That may change by the time you look tho.(Not a single one was online when *I* looked)

Maybe they are all at work? Maybe JL is out earning a living, putting money in his pocket the hard way to keep his family fed/housed, AND to help pay the expenses here?

I wasn't asking if they were here at that 'exact' second. I meant had any of them been here since the topic was first posted.

I am sure they are all out doing all of the above but since they are also on the Brain Talk 'team', they spend time here too.

Now, since I addressed my suggestion to them, you and I have no need to discuss it further.

Moderator #9

10-06-2006, 10:32 PM

Yes we are reading this thread. Yes we are discussing the suggestions.

No we don't have any answers yet. When a decision has been made we will let you all know.

Please keep the ideas coming.

mmcc53

10-07-2006, 01:56 AM

AkLAP,

This is not a quote from me. It is a post from Meg1. I would appreciate it if you would go back and fix your posting.

"Focus. This isn't about you and your old posts. This is about a monumental technical problem that you believe you have a right to demand be solved. You don't. Like you, I hope John is ultimately able to restore what was lost but he owes me nothing. All of us here have gotten infinitely more from him than we'll ever give back to him.

If your interest is really in support of those who are ill and maintaining BT as a repository of knowledge, start googling all that info that was lost and post it on the appropriate page. Include commentary with your posts. Don't forget to save a copy of everything you believe is important. Do that for years and you'll soon realize the costs of archiving all this information and perhaps be more symptathetic to John's current problem."

aklap

10-07-2006, 03:09 AM

Post is fixed - sorry for the trouble!! :o

Jolene

10-07-2006, 06:40 AM

Nothing in life is guaranteed. From the beginning of time information has been gained and lost. Yes it is too bad the system crashed. But then had it all been in books who can say there wouldn't have been a fire??

People often look at things in the short term. Long term maybe this has all happened for a reason...? The forum and system may end up being better than ever. It was obvious that things had grown beyond JL's wildest dreams. It's kind of like a highway. If they had any idea how Chicago was going to grow, and how traffic was going to increase would they have built the freeway junction of I-90 westbound onto I-94 going into a single lane to join? If you've never been to Chicago that won't mean a thing. I bet wherever you are there's a similar problem. The same thing applies to BT. I doubt anyone could have predicted what it would become.

I suggest you contact John Lester and offer to buy it. Then if he agrees you can run it as you wish. Then we can all be here posting about what you should be doing... :D

mmcc53

10-07-2006, 11:08 AM

If you look at the MS site (one of the largest here) look at how many views and posts there are on the research infor posts vs. the more personal MS problems/questions posts. It is clear that far more people read other things than the research infor.

Personally I am mostly interested in the research and the practical MS issue posts than other things, but I am not in the majority.

Before the crash happened, the same thing was the case. Research posts/updates usually moved to page 2 after less than 24 hours.

Losing the past research posts is a problem, but clearly not the main reason people post/read here.

mister

10-07-2006, 11:19 AM

From my observation it appears that this system has provided a great service to many for some time. It is currently dealing with an internal crisis that is , in part, of its own making. JL doesn't appear to have the time to deal with this board to the degree that he once did and as soon as power was delegated to others, who had no oversight, things started to unravel from the inside. This site should be a group effort rather than an authoritarian site where the only ones who are right are the mods and the "in crowd" Secrecy about who the mods are has contributed to this problem and left some of us wondering who can we turn to for answers when the mods say they don't know and can't get in contact with JL. They seem to be in the same boat as many of us. We can't get in touch with him either and it is frustrating many of us (including the mods)

JL has done a great job over the years with this site but it seems to be beyond him at this point because of his job and other responsibilities that he is dealing with. Maybe it is time for him to delegate the oversight of this site to someone who can do the job and has the time to do it.

That back stabbing and infighting in the site of recent months and the blatant favorable treatment being given to some members of this site is clearly apparent to anyone who cares to open their eyes to the situation and clearly needs to be addressed.

Some mods need to COOL IT. Some in this site have been seen telling posters and chatters to shut up rather than hearing them out.

Time to open the doors people and take down the curtain that the mods are sitting behind and make this site transparent as bt2 is. The only thing preventing it is the administration, rules, and maybe the mods themselves. It would lead to accountability by all. That is something that many fear because they have becomes so comfortable in their hiding behind the rules.

Rules need to be changed and things need to be modified for thr betterment of the site and the well being of all involved. As it is know when you have a problem and you aren't part of the "in crowd" you get ignored , treated harshly or banned all because there is no way that we can state a case to the mods. I know some who have been told in bt that if they contact the mod directly they will suffer the consequences of an added suspension. That is for the people who were suspended for unwarranted and unfounded charges in the past and were given no option to appeal their suspension to anyone

Accountability by all can resolve that

Regards

PwMS

10-07-2006, 11:35 AM

Yes we are reading this thread. Yes we are discussing the suggestions.

No we don't have any answers yet. When a decision has been made we will let you all know.

Please keep the ideas coming.

Thank you for your 'gracious' response. ;)

mmcc53

10-07-2006, 03:11 PM

I had originally thought the moderators were people who did not post under other names. Apparently I was mistaken?

How about one of two things:

1. Have moderators who do not post except when neccessary to moderate - in other words, people who do not take part in the discussions.

or

2. Have the moderators post anywhere they want, but only when identified as Moderators - get rid of their "personal" name altogether.

I do not like the BT2 method or I would have stayed there - half the discussions are the moderators talking to each other and they are NOT identified as moderators unless you go to a special link and look each one up. That is awkward to do and with the memory problems many of us have, not practical - we have to do it every time.

There does need to be some method, however, to guarantee fairness, and if people want to serve as moderators, they need to respond to emails. There also needs to be some way to have someone look at a situation when someone feels "wronged" by a moderator. Perhaps having one moderator serve as administrator - someone who can be appealed to when there is a problem, real or perceived, with a moderator?

Jolene

10-07-2006, 03:20 PM

That administrator would be John Lester. As he is busy it takes time to sort things out. However it usually gets dealt with. I don't believe there have been too many problems involving JL's moderators on his website. What went/goes on elsewhere I can't help you with.

lady_express_44

10-07-2006, 03:38 PM

I do not like the BT2 method or I would have stayed there - half the discussions are the moderators talking to each other and they are NOT identified as moderators unless you go to a special link and look each one up.

What goes on at BT2 is probably not relevant here, and vice-versa, but . . .
most members only post on their few forums of choice, and the moderators names for each forum are clearly identified on the bottom of the forum page.

Please bear in mind that that board was originally started in an effort to bring BT members together again, however, as a viable information resource/support alternative, it is in it's infancy still.

Decisions are still being worked out about how best to meet the needs of that membership. Please feel free to make suggestions there, if you have some.

Cherie

Grasshopper

10-07-2006, 04:18 PM

I had originally thought the moderators were people who did not post under other names. Apparently I was mistaken?
Yes - they are selected by JL from the ranks of regular members.

How about one of two things:
1. Have moderators who do not post except when neccessary to moderate - in other words, people who do not take part in the discussions.
This would not be fair. You cannot expect someone to give up their support group and friends just because they have been asked to take an unpaid job.

OR
2. Have the moderators post anywhere they want, but only when identified as Moderators - get rid of their "personal" name altogether.
But this would defeat the entire purpose of being reduced to a number? How is one to have the quality of a cyborg if they are allowed to demonstrate any human side of themselves?

I do not like the BT2 method or I would have stayed there - half the discussions are the moderators talking to each other and they are NOT identified as moderators unless you go to a special link and look each one up. That is awkward to do and with the memory problems many of us have, not practical - we have to do it every time.
No, that is not the only way, by any means. True, on that page, http://forums.braintalk2.org/showgroups.php, it shows the entire list of moderators (17 currently), plus the particular forums they are responsible for. All forums have at least one moderator currently.

But you can immediately find a particular forum's moderators at the bottom of each forum's index page, i.e., Bipolar - http://forums.braintalk2.org/forumdisplay.php?f=38 and Autism - http://forums.braintalk2.org/forumdisplay.php?f=8 All of them actually respond to PMs, too!! And they PM you first, as a co-member, not a authoritarian figure, if they are alerted to a "problem post". They discuss things with you on a private level. If there is to be any deletions or editing out, they prefer to let you do on your own what you deem appropriate, rather than come in and start policing the situation.

At BT2, their transparency, continuing to use their own forum identies, places tremendous accountability upon them, and is the main reason why so much "forum administration" goes on in PMs, in private, so no one needs to be publicly dressed down. Thread deletions, thread lockings and temporary community suspensions are not the weapons of choice, but only the back up final resorts.

There does need to be some method, however, to guarantee fairness, and if people want to serve as moderators, they need to respond to emails.
Not necessarily emails for that erases some of their privacy. But PMs, yes. At BT2, 500 hundred PMs are allowed in your mailbox, rather than only 50.

There also needs to be some way to have someone look at a situation when someone feels "wronged" by a moderator. Perhaps having one moderator serve as administrator - someone who can be appealed to when there is a problem, real or perceived, with a moderator?
But this has its own problems, too. A single moderator never works as well as a team of equals. No person is perfect, no person infallible, and so there is no guaranteed fairness in such a court of last resort.

With a team, there is no mandatory last resort, for the team may come eventually come to another conclusion. At BT2, all the moderators work in teams and they MUST consult with all the other forum mods if an exchange of PMs doesn't evolve into a meeting of the minds and iron out a problem. And they must consult more widely before taking any sort of public action and as radical as locking, deleting (actually, only hiding - sometimes permanently, sometimes temporily) or temporarily suspending a member.

Dentist Hopper

SalpalSally

10-07-2006, 04:28 PM

mmcc53

10-07-2006, 06:42 PM

What goes on at BT2 is probably not relevant here, and vice-versa, but . . .
most members only post on their few forums of choice, and the moderators names for each forum are clearly identified on the bottom of the forum page.
I agree that people choose different forums that suit their needs. BT2 is not the only forum that operates that way - "transparency," BT2's method of dealing with moderators suits people there and on other forums that use it. I simply used that as an example.

I just don't care for that way personally because it seems to have the worst of both worlds. If the idea is to make it known who the moderators are, then I think the word "moderator" should appear under the person's name.

I just can't remember long enough to know who is a moderator and who is not. I don't understand why if the moderators are known, IDing them is not more obvious. I have seen the same thing on another forum - the NMSS forum ???? - People know who the moderators are if they have been there long enough, but they are not IDed when they post, which is VERY confusing, especially to new members or infrequent readers/posters.

I don't like that system. While the one here is not perfect, I prefer it -- to each his own.

My personal preference would be moderators who did not engage in the discussions at all.

This would not be fair. You cannot expect someone to give up their support group and friends just because they have been asked to take an unpaid job.

You could do it by having a moderator who was interested in the MS forum moderate other forums but not that one. Then they could post on the MS forum as an individual, but deal with other forums only as a moderator.

There does need to be some method, however, to guarantee fairness, and if people want to serve as moderators, they need to respond to emails
Not necessarily emails for that erases some of their privacy. But PMs, yes. At BT2, 500 hundred PMs are allowed in your mailbox, rather than only 50.

Emails or PMs - would make no difference to me, but I am sure email addresses for use by moderators operating in moderater mode only could be created with not big problem.

southernlady

10-07-2006, 10:46 PM

At BT2, 500 hundred PMs are allowed in your mailbox, rather than only 50.

This can also be set by usergroup, so while we as members may only have 50, we do not know exactly how many the moderators here have. They are in a separate usergroup and could very well have more. Liz

HeyJoe

11-10-2006, 01:40 AM

The silence is deafening

Jolene

11-10-2006, 01:49 AM

Joe what are you trying to accomplish by bringing this up??

HeyJoe

11-10-2006, 02:56 PM

I havent read this section for a while and silly me, I thought that there might be some communication from on high. Next time Ill check with you Jolene before I have a thought and post it.

Jolene

11-11-2006, 10:07 AM

I asked because it seemed like you were stirring things up

ASkicker

12-01-2006, 06:48 AM

You know, I had typed out this really long message completely supporting Meg and joining her in pointing out the utter ridiculousness of these posts by Glenn and the rest of you who feel that John owes you something (because apparently somewhere along the line Braintalk became not just a forum, but part of the public trust? Huh?), but then I woke up and realized what an utter waste of time it was to make such a post because it wouldn't make one iota of difference anyhow. Glenn and Co. have clearly made up their mind about what they are entitled to in this case, and to try to change their minds is to go off tilting at windmills.

Instead, I'll just let you know Meg that you are definitely not alone in this and that others feel the way you do--we just got tired of banging our heads against the wall long before you did and sat back and marveled at how good it felt when we stopped. In another day and another place, I'd have your back and would be firing off the posts as fast as I could type them, but I just don't have it in me anymore. Glenn et. al. will never see the fallacy in their arguments, therefore it probably behooves you and me and any others who feel the way we do to simply let Don and Pancho tilt at THEIR windmills while we go off and find more productive things to do here at Braintalk. However, I will close by saying, "Bravo, Meg, well played," as I head out of this ludicrous thread and off to the sanctuary of my bed.

ASkicker

12-01-2006, 06:52 AM

Amen, mmcc53, amen. Your post in response to Paula's "anger management" post was so perfectly written, I wish I had thought to write it. Kudos to you and to Meg1.

Jo6

12-01-2006, 07:00 PM

My stength has gone and I'm sorry it picked such a strange time to do so.

Lets see, I don't have much to say, never do for that matter. I believe Administrator Mike said he would let everybody know when he had a chance to speak with John L. about the "database" We've had all these months to voice our opinions. What more is there to say ?

I have a lot of questions to ask about the all important "database", but I won't ask them here.

I will say I have been my MIL's caregiver who suffers from Alzheimer's Disease with very little help for years. We finally had to place her, but hubby and I still do every thing we can for her.

When she was first de'xed I had no idea what to do at all. that was way back when I had a few min. to myself. That was to change very soon.

I will tell you all that I soon did not have time to eat muchless go hunting up new things that may or may not pertain to her illness.

I am not saying I knew it all, but every one is different, the "7 stages" was not worth exploring for me. She has bounced all over the place.

When I begun to understand a little about the disease by dealing with her I had no time to do much reading.

I guess I feel like a lot of people here, if it was worth building and taking care the word was out then by all means rebuild the "Alzheimers " data. I don't have much time here anymore, just now and again. I post on other forums besides BT and that is not counting Neuro Talk.

Folks, if it was worth posting one time you should not have to hard a time to start posting again. I wish you much luck in doing this.

For all others I wish you all well. We have a good group of people, here at BT as well as Neuro Talk. I intend to get all the help I can get from both.

Regards, Julia

Jo6

12-01-2006, 10:29 PM

When I first came to BT, the Classic Chats were almost always full. I think John was working on the forums and these other projects , but he always seemed to have time for each one on a personal level.

About a dozen people had LO's with Alzheimer's Disease and as much as possible they filled that Chat Room!

We talked out our problems with each other. We helped each other when it came to the meds. etc. Making it short we were each others support system.

Of course we all shared the information we found and about that time there were some very promising meds. being tested.

About 10 years, we watched and encouraged each other. We had several patients that were asked , with their caregivers permission to take part in some of the new meds. study.

I guess I went around the gate and back to say there was nothing in this world that took place of the caregivers talking to each other.

One of the caregivers wrote a book after her father died. We all kept in touch, being there for each other even when their LO's died.

We got scattered when we first moved to the "first new forums".

WE are now down to 2, my MIL and another lady from Canada. I would not take the world for the things I learned from these beautiful people.

I mean no respect to anyone and their research, but so many times we tend to get so busy doing research we forget there are human beings behind those keys on this board.

There is nothing like a hug, pat on the back, asking if you may share their pain etc. Lets not forget we are dealing with human beings.

Jo

ps: Glenn, I'm sure you meant well, but when you said the forums were about to become nothing but a chatty room and we couldn't have that. Not you;re exact words, but that is how it came out to me.

I choose to believe you had not had experiences of this nature, but I also noted how much of yourself you put into your research and you can be proud of the things you do to help others. Julia

glenntaj

12-02-2006, 08:05 AM

--basically, was that Braintalk was not like other forums, and was more important/influential, because of the enormous database.

Yes, it fulfills functions of communication and support. But many forums do that equally well. What they do not have--or did not, if we don't recover the info--was/is the enormous database.

And, I still hold that JL does have some reciprocal responsibility for this site and the many, many people who use it, due to the fact that it in great measure made him famous and allowed him to do, and get remunerated for, so many other things.

I do think there is a quiet recognition that things had not gone the way they should be among some of the powers that be here. David H is being very conscientious about the site and how it is administered--especially as regards the possibility of arbitrary moderator action, another issue that was part of the "complaining"--since the place got back up and running. The moderators themselves seem somewhat more muted/measured in their communications/actions. I also think that it's been shown that all credit due to JL for setting up this place and letting us use it, we're not the highest priority in his life recently. That may turn out to be OK, but more direct communication from JL would have been most appreciated, especially during the months of downtime.

I still think attempting to get the old posts/data back is a high priority, if it is in any way possible.

I'm not sure to make of those who think my communications are only sour grapes complaining--I really was trying to make a sociohistorical argument with appeals to social norms. In the larger sense, maybe the idea that nobody owes anyone anything--that there are not social obligations, only legal and monetary (that is, enforcable) ones--has gained total ascendency. But I like to remember a time when perhaps the other idea was an accepted subject of debate.

Matt A

12-02-2006, 09:53 AM

And then some day
the
plug
is
pulled......

BOOP BOOP
>>>>CLICK<<<<

Mike Weins

12-02-2006, 05:29 PM

I have made a couple of posts regarding the old database. My understanding is that it is intact and stable for the most part. One of my duties as admin here will be to set up the old database into a read only forum. I don't have the database yet, so can not say when this will get done.

As for John needing to explain himself, well that's entirely up to him, nobody else can speak for him.

Kamie

12-04-2006, 02:19 AM

One of the biggest complaints people have had about this place is censorship and fear of retribution if they voice a negative opinion.

I am glad to see that this thread has not been closed and that people are being allowed to voice their concerns both positive and negative.

I am also glad to see that some things have been done to help improve this place (like the forum to ask the mods questions). Those are great steps in the right direction.

I am also glad to see the addition of Mike Weins as an administrator. He is a good person for the job. I also appreciate him being honest and not sugar coating things. I respect that.

I do hope the database gets taken care of soon. JL seems to be a very slow person in getting these things done. However, they do get done eventually. So my best bet is that we will have the database back by the middle of next year. Not ideal. But atleast this place is back up and running.