General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 08-28-2006, 08:04 AM #1
dahlek dahlek is offline
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Default DocJohn - seems like the 'tidal wave' has subsided?

It's time for everyone to get down to business and start posting, albeit for now-HERE, on those matters relevent to their primary issues

Again, I for one, and many I'm in private communications with, applaud and sincerely appreciate your efforts, DocJohn. Apparently, however, a storm of short and long-term frustrations were released. Not your fault at all! In a way, it was healthy- fact noted that even I got caught up in it all. Since many of us have conditions aggravated by stress, I'll blithey [albeit possibly in error] attribute it to a lack of constructive outlet for some [short-term], & others [long-term]. For those not able to voice certain opinions long-term, it seems that in some ways they still consider BrainTalk in any form worth keeping tabs on. In ways, an indication of it's value.

That all said and done, I see there are several things I've gleaned from these outlets/discussions that ALL BrainTalk folks, be they administration, technical, moderators, or board should SERIOUSLY note for the future health and longevity of the boards themselves.
1-Participants, lurkers [banned or otherwise] ALL care passionately about these sites-no doubt about it! True #'s can be easily gleaned w/the rite programming-I believe.
2-Participants and others all view it as an invaluable resource and want to help in the boards' survival, and many, would be willing to contribute whatever expertise they can to ensure that survival for a Very LONG time! Some are equally frustrated that offers of aid in any quarter have been ignored. Easily fixable as these volunteers are trained in the areas of expertise and would need little direction.
3-Many participants are frustrated - either due to the immediate absence or due to certain other aspects they felt powerless to discuss.
4-Some participants have been using either JL or you as the source of their frustrations -when that quite possibly is not the case. Others should be accountable as well, the board, committees, and moderators. It is not a comment to denigrate their efforts, which I am sure are substantial, just that communication as to the organization's execution of mission, in terms of needs & decisions, other than contributions have not been articulated at all.
5-All key people should read all these posts as REQUIRED. Have short issue focus meetings and do a LOT of quick and dirty 'damage control'. One step at a time.
6-NOT STOP THERE! Stop and think People--those who are responsible for this quirky animal - What is SPECIAL here? What is VALUABLE? What can we do to keep it going AND GET not only national, but truly INTERNATIONAL [potential is there] recognition for all this work [translated=hassle] it deserves? WHAT do we need to keep going, then growing?

Lots of folks have said: OK let the drug companies fund it; or the Docs; or computer people. But HEY MEMBERS! One of the virtues of BT as it is & has been is the fact that some 'POSTER' is not really a drug rep in disguise peddling their brands. Also, I for one, DO NOT WANT TO BE A GUINEA PIG without my approval or consent!

Any funder wishes to be acknowledged, for non-profits, the how's, when's and where's are important, and can be sticky, or they can lose that non-profit status.

For those who consider the future of these sites, consider HARD these issues, and know that there are many folks at these boards who can contribute lots of expertise of an in-kind nature...stuff you CAN tote up in a 'contribution' form all of which can add up to a healthier & most beautiful inter-disciplinary medical board!

As for the rest of us - let's get down to the job of doing our posting, stop complaining, give where we can for now. And, hope our street savvy's can be tapped and used when needed.

Good thoughts to all! - j

And, yeah, this should be under ''forums" but, I thot I'd get your attentions! Get posting!

Last edited by dahlek; 08-28-2006 at 08:09 AM.
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Old 08-28-2006, 08:15 AM #2
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Great post!
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Old 08-28-2006, 12:52 PM #3
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Agreed.

I hope the fine folks over at BT take the time to read some of the posts here and don't get caught up in individual attacks so much as the broader message -- more accountability and transparency into the administrative processes, and especially more leniancy around the whole banning issue. Communicate more with your members.

I see community forums as not just a "Here they are, take them or leave them," but as a two-way street where the people in charge have to be actively involved in the community. It is a serious responsibility. I think the fine folks at BT take it seriously, but lack communicating with their membership as much as the membership would like. That's easily rectified and I hope they spend some time rediscovering the joys of running an online community.

I don't know David, but from what I know of JL, he is a great, caring guy and I suspect there may be some lessons learned here. I hope so, because in the end it will result in a stronger and more vibrant community.

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Old 08-31-2006, 07:51 AM #4
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great post dahlek,

I think a lot of the anti BT1 posts were said in frustration too. and now people are getting back to what we do best... support each other and pass on our Knowledge to each other.

How many of us have been able to talk to our doctors using knowledge that we have gained from BT?

I wonder if John L and the mods there have read these forums?

I hope they have.
And I hope they have the understanding to ignore the insults and consider the positive suggestions.
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Old 09-01-2006, 10:40 AM #5
dahlek dahlek is offline
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Default All ego aside...

a bump! - j

I have little ego left after onset!
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