[glenntaj]

--just as I was about to post to *another thread; It's covering a lot of issues that really, as some of the posters said, don't have to do with Neurotalk specifically, but with experiences at boards in general, but I figured I'd try to give a summary explanation of why these issues may be so important for the gluten board (although, as you shall see, I don't think it's an issue for only the gluten board).

I'm not one of the original "misfits" from other celiac boards----but given my situation I do have good reason to use forums about celiac/gluten sensitivity; I just came to them from a different angle--the peripheral neuropathy one--and I understand, and empathize with, the feeling of many here that they cannot ever completely trust one board again.

Much of that feeling stems from the loss of the enormous database that was built at Braintalk. There are other subject areas here that have similar histories--the peripheral neuropathy board there also sported an enormous database, as did the vitamin/mineral/supplements forum--and these seem to have been lost forever over there. (BTW, for those here at Neurotalk who may not know, there've been tremendous posting battles at Braintalk over the effort, or lack thereof, to bring back those archives, as part of a subset of contention over how that board is run in general, and the seeming lack of interest of its founder in it now.)

We may have all been a bit idealistic at the start, not realizing we should redundantly back up ever study we found, ever piece of information we gleaned. And, many of ust felt that since many searching the Internet would not have an idea where to look for information about these issues, it was good to have all the data in one place, at a board where many people came through Internet searches for other topics that one would not think were directly related to ours. We were wised-up by the crashes over at Braintalk, and many, such as Cara and Rose, have set up there own websites because of this. (Mrs. D is thinking of starting her own blog as well, and of importing all her pharmaceutical and supplement data to it.)

I think what it's come down to is that even when one likes a board--and I do, in general, like this one--one cannot completely trust any board one does not own or have administrative say over; there are too many possibilities, inadvertant though they might be, for too much precious information to be lost. And, many have had experiences at even the "nicest" of boards of sudden influxes of flamers and other ne'er do wells that make the place hell to be at. So we cannot afford to leave any information at just one place anymore. It makes more work for everybody, and may engender some confusion, but the stakes are too important.

All of us have memories of feeling like we were the only one suffering these odd symptoms, and of eventually finding communities who not only had similar stories and empathized--the original purpose of these boards, I suppose--but of having compiled, at the same site, a massive amount of information that could be helpful, on medical professionals, treatments--the whole gamut. One would not have to click over to someplace else. We'd all like that to always be the norm, but given the history, we feel that we'd better have other places to click to where the information is stored, just in case. In other words, it's not personal; it's more of a wistful realization that things on any board I do not personally control may change at any moment, and that we should all be prepared for such an eventuality, as we had not been before.

[kimmydawn]

I would like to remind posters that any replies should remain supportive to the site and its members as a whole.

If you are unsure, or have questions or comments, please PM me.

Thanks,

KD

[aklap]

I don't think we've ever been unsupportive to this board or it's members. We just want the board and it's members to appreciate and understand how we work. I understand that the needs of many outweigh the wants of a few. We just happen to be the few that had certain rights and have been stripped of them.

I think we've run the gamut of discussion on this matter. As I said, I don't see it changing [I understand the need for it on other areas], so it's really up to us. We must decide if we want to conform to your rules. "Your living in my house, you play by my rules"...I suspect we've all heard that from our parents at one time or another

[loisba]

The database at OBT being essentially lost, I for one intend to do what I can to build up our database here, a little bit at a time. If everyone would do that in their own field of concern or expertise, in hopefully not too much time we would have something really valuable to take the place of what was lost, but in a much more stable environment.

[DocJohn]

Keep in mind, we're open to rules changes, too. We're not some anonymous "they" that hide behind aliases -- we are you!

We have said we will reconsider past decisions in time, just to give us some breathing room and time for reflection.

Thank you for your continued support and contributions, they are very much appreciated.

John

[Swuzly]

Greetings All,

It's me, teaandtoastgirl from BT.

If some one can get in to BT and let the newbies know where you are, I think it would be appreciated. I know it was for me. I am not able to open threads over there, I cannot post and I cannot access my email over there to let anyone else know. Even logging on was very difficult.

I think, RosemaryThyme and GAngel would probably want to know where we are and any other newbies you can think of too. Support is so important and so very much appreciated, especialy to the new kids on the block. Thanks so much for letting me know you were here.

Leslie

[aklap]

John,

I appreciate your response. There is very little that we ask of any of our hosts [it's only ever been BT until "the crash"]. We mind our P's & Q's and are respective of others. Frankly, the people that inhabit the gluten board are some of the most passive and accepting group of people I know. However, when something [unlimited editing] has been granted, taken away, granted and then taken away again, I tend to get a bit testy [I'm trying not to speak for the group, as I'm not the mouthpiece by any means ]. We have had unlimited edit abilities since I've been involved [BT for 5 years], and I suspect it goes back further than that. It's a privilege we've always had. I do understand that this is not BT. As a matter of fact, the same beef now applies to BT as well.

Look, all we want is a place that we are allowed to help people and share/organize the data we find. It may seem silly to those that don't understand, but we have figured out ways of organizing and indexing the data we post out here to make it more readable and understandable to those in need. Allowing edits to data is essential for this process.

I haven't had a chance to do a lot of research at the vBulletin site, but are there modifications that would allow you to grant editing rights to individual forums? I suspect edit time frames are board wide and not forum selectable.

As I said previously, I fully understand the reasons behind setting edit timeframes. I can appreciate the importance of that feature in certain situations. If there's nothing that can be done, that's understandable. Those that don't like the rules will have to decide what's important to them.

Thanks for your time. Also, I do appreciate you "opening up your house" during the time of need.

[kimmydawn]

A suggestion for the time being would be to copy the post you want to edit/add to and paste it into notepad. Make your changes, then re-post it in a new post. Just let a mod/admin know to delete the old one and there you go.

You are still in total control of your post, changes, etc. The mod/admin is doing nothing but a simple delete.

A bonus to that is that it automatically bumps the thread for viewing by those who need information, and gains more viewing.

Is that a workable solution for the time being? In fact, it would make the information viewable on a regular basis and more often?

KD

[NancyM]

Is that a workable solution for the time being? In fact, it would make the information viewable on a regular basis and more often?

Seems rather labor intensive and time consuming of both the end users and the administrator's time.

[jamietwo]

I wonder if a compromise could be worked out? Maybe take our top 3 (for example) researchers and grant them limited moderator privileges for editing? I'd love to stay here, but it just wouldn't be the same without all the helpful and knowledgable people that have helped me so much!