--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.
Last edited by kimmydawn; 05-07-2007 at 05:57 PM.