me either! I've been dorry since joining braintalk1. Maybe the problem is we all had our little hidey holes over there and saw the same posters day after day. Here, everyone is new to each other.

Guess we should have an introduction thread!

Hi I'm dorry. Joined BT1 when I got rsd from a wrist fracture. Got alot of good medical info and hooked up with some long lasting friends. Migrated to the computer forum about 3 yrs ago. That's about it :o

Yep. And it's really sad that they get crucified for it. I admire ppl that will step up to the plate and fill a need, because it needs filling.

All this paranoia, just tells me that BT1 had more trust issues than I ever realized. I remember that boardtracker episode where everyone freaked out. With the internet you have to be careful, but take a chance on meeting a few great people in a caring community. Life is too short and there is much to gain from having a little trust in ppl.

huh? He didn't add all the forums? Where is this entitlement coming from?

DocJohn you are a patient man aren't you? lol

Maybe it is simply a random act of kindness as Dr John says it is

Gosh, conspiracies abound! The fact that whichever forum says that is indicative of the fact that DocJohn got the basic list of forums *after* BT2 went down, using the Wayback machine or webarchive (a simple google search will let you find those).

Swift

The insinuation that BrainTalk crashed because of the mods retreat (or because nobody donated to it) is quite funny. I can say with 100% certainty that Mr. Lester wouldn't do that to the members of BrainTalk.

a safe place
 

I like Dorry's idea of introducing ourselves. I 'm a retired teacher [on disability] from the Parkinsons Forum, been at "MGH' now Braintalk since 1998. I have made dozens of friends here, and know what a small group of dedicated people can constructively accomplish.

We have an excellent forum, with few problems. It is restrictive though, and I don't like being scolded by moderators. [or anyone else if a dispute should arise]. I do not see any reason to tell another poster what to or not to post.

But in return, if you are going to cross the lines of decency to the point that someone has to complain - name calling, accusations, deliberate needling, etc. then you have to take what is measured out to you.

One of a PD patient's and of course many of the other patient conditions here is lack of motivation and energy. It is imperative that to keep living as 'normal' as possible a life [one where you get out of bed in the morning at least], to have the "synergy" of a 24 hour a day safe place.

But we must know, not just want to believe, that it is a safe place. Most places on the Internet are questionable and hatred, sexual harassment, and trolling are rampant.

This one feels safe, but the conditions behind the switch and John Lesters's behavior seem muddled. Maybe that isn't what's important, as long as this one is truly safe.

Put myself to sleep....back to bed.

Paula

Swift has it right -- I just went to archive.org and copied the list of the "biggest" forums (because there were so many and my time is a little limited), and their descriptions, and created BT2 from that. I admit I didn't read the descriptions in many cases, but will go back and edit anything inappropriate or inaccurate.

As for my purpose, it is as others have suspected... I have a *lot* of respect for online communities and have learned a lot from running them for the past 11 years. One of the things I've learned is that many, many people rely on them as literal lifelines to the outside world. You take away one of the only or few lifelines of a person and you can cause a lot of emotional pain.

As a psychologist, I can't help but look for ways to help people reduce their pain.

So when I see a community seemingly abandoned, with little regard for the daily support so many people appreciated and needed, and I can take some positive action to help, then I'll do it. It's just my nature.

John

BT has not been affiliated with MGH in a number of years - and in fact the BT server has been housed in a hackers den for a few years.

So if you feel as if less concern is needed at BT (in a hacker den) that is your opinion. However, I personally feel much safer here where my IP address is not available to members of L0pht Heavy Industries (as it is on the BT servers).

Yup, it's a learning curve for all of us. I hope everyone takes this place as an opportunity to "start fresh," without bringing over a lot of the baggage from other places. And if some folks want to do that with a new username, that's fine by me.

I mentioned this in another thread, but I'll mention it here too -- of course there will be some guidelines for posting here, if these forums remain. But my main guideline has always been the same -- treat others the way you would like to be treated, remembering that there are live, feeling human beings behind these names.

John

Well Said Doc John

Ditto on both counts Granola Liberal. :)

I thought it was in Cambridge

http://en.wikipedia.org/wiki/L0pht#Founders

Many computer geeks started out with an interest in hacking and migrated to security, because they realized how vulnerable systems are.

People are much more at risk from the information they freely post about their private lives online than any risk from hackers. There is a delicate balance between being open and revealing too much information. BT1 continually warned members that the forums were available to the public and web archives. It's everyones personal responsibility to follow that advice.

If you build a supportive, caring community that can vocalize and resolve their difficulties in a civil manner, you will have a healthy balance of people that will have little interest in trolling. When people gang up on others, that is when they are at risk from others wanting to know more about them from what you freely put out there in the past.

The best way to surf is to be considerate, civil and supportive. A community where your voice is as meaningful as the next persons is invaluable to keeping peace and creating an environment where everyone is equal. When cliques of abusive members are tolerated and encouraged, it leads to dissention. The best deterent is for members to self police themselves and use the ignore feature when available.

When I surf I try to avoid situations where I'll paint a bullseye on my forehead ;) It's something I learned through the years online, but was clueless as a newbie.

That's the best advice I can give, other than reserving really private information for PM's and email contacts with those that you trust, while keeping in mind that online communities are a haven for gossip and what you tell another privately will most likely make it to someone elses ears.

I support others that have changed their usernames to protect their identity when they are looking for a new beginning from past revelations they may have made from poor judgement. We are all guilty of doing that, and that's why it's important to allow people to edit their posts with no time limitation to remove personal information when needed.

Even if you were an SOB on the old forum, you are welcome to change your identity, hopefully along with your attitude if that's what you want. I've never met a perfect human being, so my standards are not very high. The only time I ever get upset online is when I see others mistreated and abused. I have zero tolerance for that.

If someone offends you and you fear they will edit their post, QUOTE their post in your reply and it will be there forever.

It's also wise to use a seperate username and email address for every online forum you go to, unless your identity is public information from business activities and you choose to divulge that. I am dorry here and nowhere else. People that I've cared to contact privately, know my identity, and I theirs.

I have no fear of DocJohn having my IP and email address. It's what I post that is far more damaging to my personal life, if I choose to make enemies online.

Here are some links. Not sure how much info can be gleaned though. The last link is JL’s web page…

http://www.hastypastry.net/
http://zero.hastypastry.net/
http://zero.hastypastry.net/brain
http://zero.hastypastry.net/dojo/sho...1620#post21620
http://zero.hastypastry.net/pathfinder/

dorry,

Thanks for the good advice.

Not much is gleaned from those links and I could not find any proof of the previously mentioned rumor.

hannahbanana

Forgive me then for misunderstanding your post. To me that's how it read.

BT1 is at the IP address, 199.201.145.187.

A whois lookup on that IP address will show that it is owned by "L0pht Heavy Industries," which was a hacker group (see the above Wikipedia link):

http://www.dnsstuff.com/tools/whois....99.201.145.187

I'm not sure what that means, since the group is supposed to be defunct.

John

Keyword being WAS.

Even if they still are a hacker group...the majority of people don't know what a hacker is so they should check this out.... http://en.wikipedia.org/wiki/Hacker

So a "hackers den" isn't a "bad" thing.

This is information that John himself put out on Braintalk even before he left MGH.

Nothing here ils new information he told everyone himself.

For the record - I never said I felt unsafe on the original BT, nor was I concerned about hackers and my IP address.

If I was concerned I would have stopped posting/participating in the original BT a long time ago when I discovered the L0pht Heavy connection with BT.

I was simply trying to point out 2 things.

1.) That BT and MGH parted ways quite a while ago when the server was moved to a new building.
2.) That it made no sense to feel unsafe here at BT2

I certainly was not trying to make anyone feel as if hackers were bad, or that hacker dens were a bad place for servers, or that BT1 is/was dangerous in any way.

Dorry is correct that the personal information we share in our posts is what we should be the most concerned about in regards to internet safety.

I was just sharing an opinion that I feel safer here at BT2.

I apologize if I caused any confusion.

holy cow...
 

what more paranoia can we introduce into these threads?

Hackers! OMG! hide your credit cards! They're all around!:D

Sounds like someone is still tweeked that they didn't get to be a "braintalk nerd". :mad:

Are we now suggesting that because the BT server resides in, more likely "nerd think tank", [than a hacker's den] that we are to be paranoid of JLester and/or his motives?

Gimme a break. Anyone who strives to acheive anything of significance on computers knows that size, speed and power are of utmost importance. If his online community was no longer a priority of MGH, then "banding" up with a group of computer gurus with equipment, resources and cables is a smart thing to do. Sharing a T1 line makes absolute sense. This would allow him to have retain control, with less expense.

That it [BT] isn't a "perfect" world should not be a surprise. Although being offline for over a month is not the ideal...it is quite possibly the reality of the need to keep expenses low [even with donations]. IMHO

Again, as I stated earlier...JLester doesn't "owe" anyone anything. Yes, there is great value to an online support community, no argument there. NO, no one should build expectations of that online community offer the same resources/support/uptime as those that collect user fees. It just isn't a fair expectation, IMHO.

We can all have our opinions on how BT should be run (and we definitely do), but the reality is: why do we "expect" this Mr. Lester to make us his number one priority? Simply because he started it...doesn't mean that he must in the usual analogy, be father to it.

Should WE feel at all "entitled"?

Why do we expect one person to serve us all? (storage for all time, 100% uptime, speed at displaying messages, unlimited access, as well as a supportive atmosphere and a tolerance to all personality types; and "helpers" that can do no wrong in mediating and technical support)

You now have another "support" avenue here, that I am assuming can do better. Enjoy. Hope you don't "muck" this one up as well (adds to overhead, depletes resources).

Again, this is just my POV.

Frankly our INPUT Can be ignored..
 

If it is, will we use the site any less? Think on it. What sources of discontent I've tried to summarize in a prior post. As for content, and security of same.. well any poster's name IS OUT THERE...just 'web' it up! How much you put into your profile or posts, and how easily accessable they are are different issues.

I for one, would LOOOVE to have docs read posts about how WE feel and interact with them..pros/cons.[as long as MY doc doesn't recognize ME?] On the other hand, I would HATE to have some 'research team' ANALYSE posts without history[out of overall context], permission and all the details we LEAVE OUT - ON PURPOSE. I DO NOT WANT TO BE A LAB RAT UNLESS IT IS SPECIFICALLY DETAILED IN THE SIGN-ON/UP AND SHOULD ANY QUOTES BE USED WITHOUT MY KNOWLEDGE IN SOMEONE'S FUTURE RESEARCH PAPER WITHOUT MY EDITORIAL BLESSING!!! Lurking is one thing, research w/o remuneration & acknowledgement to the source provider and validation/permission from the poster is another. BT Could Die..-maintain status-quo...-or thrive. It is now up to the leadership and the board's leadership where to go. Should either site be exploited as long as for positive purposes, I mite buy it....or go quiet. 'Bout now, I'm betting some wish I would...go quiet, that is... hey, Let's go on, complete with holes in the road. Flat tires or not...we go on. - j
A quote comes to mind now: If nothing is said, you cannot be mis-quoted.

Good as med?
 

While everything you say makes sense, there is something else to be considered here and that is the mission and philosophy behind John Ls doing this.

Wasn't it called Patients as Partners? Who remembers? Anyway, my point is that John doesn't owe us anything, but he created something that is bordering on TREATMENT. One could argue that this forum and due to the success of it, has become a vital need for some or alot of, actually, people's mental health with all kinds of various conditions.

Abrupt withdrawal is not good; we should have been and still should be better informed.

two cents,
Paula

The original BrainTalk forums were located on Massachusetts General Hospital property and "validated" by the hospital because of that physical location and because a hospital employee had created and was maintaining the forums. Massachusetts General is one of the top teaching hospitals in the world -- its name speaks volumes.

To have the servers move from there to a hacker's space (http://tinyurl.com/ncnej) -- darn straight I'm concerned. I, personally, am not paranoid -- too much life experience for that.

My concern is that a NON-PROFIT organization that's been receiving funds from some of its members/contributors is stashed in a hacker's space while the creator/overseer of the servers and overseer of the non-profit organization is continually not available and doesn't even work in the state anymore.

Before I retired, I worked in the computer support field for close to 14 years. I do not buy that a server can crash so badly that it's not recoverable in more than 6 weeks. I do not buy that it takes weeks to get new installation disks. I have gone through a similar experience. The server crashed badly because the air conditioning was not working -- something we did not know. The server crashed after my boss went on an extended vacation. I had no experience at all with the new server -- didn't even know how to login yet -- it was that new. I got in touch with peers and with the vendor and had the server back up and running within days -- not weeks. This was a server that was actually damaged by an overheated room.

I'm concerned with the images that I see on the root of the hasty-pastry server. They're not porno; they're just not appropriate for a non-profit organization. I'm concerned with the images on the virtual reality that is tied to hasty-pastry; again not porno -- but not appropriate.

I won't go back to BT1 (the original BrainTalk) unless it gets sold or the management changes. Because the level of commitment that should be demonstrated toward fragile human beings is not there.

An entity such as BrainTalk.org with the number of individuals who rely on it for research or for companionship or for support during horrendously difficult times ... an entity that has the reputation that BrainTalk.org has accrued over the years from medical professionals ALL OVER THE WORLD...deserves better than "I'll fix it when I come back from my trip".

A non-profit organization that has grown to be such a huge part of people's lives needs to have plans in place for emergencies:

- what do you do if the server crashes??
- what do you do if the one person in charge gets injured or dies??
- what do you do if the one person who is in charge is out of the country for a month when problems arise??

There should be back-up individuals in case any of the above circumstances happen (G-d forbid). Obviously, there is not.

That's my humble opinion.

Barb

Got that right ZS. Most make great computer techs ;)

Sums it up pretty well. I thought with the outpouring of financial support after the last major crash, John said he had so much extra $ donated that he was going to upgrade everything so in the future things like this would be a non-event. Guess I thought wrong.

The weeks for disks is a real hoot :cool:

Me too.

I think there's a disconnect between the community that went so far as to create a nonprofit org for itself, and the people who actually run that org (and through the org, the actual website). If one creates an org, one would think, it is to ensure the community -- first and foremost -- is up and running. And if it goes down, it gets back up in a timely manner (e.g., days, not months).

If the org can't minimally do that, I don't see the purpose of it. There's no great science or art to running a large online community. It just takes a leased server and some folks who want to help out.

John

OK
 

We're in a loop...

BT @ hacker's den = not appropriate;
but, we don't want moderators, and big brother running the show if BT is transferred to a "real" organization and wouldn't tolerate the crap that occurs on a daily basis; run perhaps like "healthboards" where I have never seen so much moderation and banning...

BT took donations and yet, servers crash = not believable, not good;
and yet, we want small town management that allows us to bicker, battle, denigrate other posters (as well as receive kindness, support, and offer same to others)...*

BT associates with virtual reality world = huh? (although it is noted that some of this virtual reality world allows those with disabilities another type of outlet, especially if they would rather distract themselves from their medical problems, than roll in their "issues")

Again, why hang around with all these negatives? I am just not following the logic.

Anyone who donates anything, to anyone via internet is doing it of free will. Donating does not grant "shares" in the direction of a vehicle, even though it may be desired.

Donating to a person, especially that is no longer associated with the hospital/organization that once gave it "validity" [in that person's eye] takes us back to: huh?

See? a loop. We ask and answer our own questions and concerns all at once.

It has been known for some time that this is a lone ranger organization. If we give, we give with the hopes that it will help. If it hasn't amounted to what we had hoped...time to move on.

If JLester isn't doing what you think is appropriate, whether it be in the location of its servers, or by the fact that he is no longer associated with MGH, then, my goodness, find another board that offers what you need.

*I have a feeling that this issue is more an inability to devote the time required to support/maintain BT, than it is a mere long, drawn out software/hardware crash (as I was sure MACs are supposed to be bitchin OSs w/hardware that never crashes).

The wonderful thing about this thread is that, by now, I am sure that this JLester "hack" will have been made fully aware of all the "issues" surrounding BT. Let's see if he responds.;)

Perfect!
 

exactly. why spend so much time trying to change something that appears to be immovable? move on. isn't this new site [BT2] doing exactly what everyone wanted BT to be?

Those that want BT, will remain, those that have paranoia, fear, concerns and some moral anger, should remain here (or somewhere else).

why continue to beat one's head against a brick wall? oh, I'm guilty of that in responding to these threads...gotta run.

If JLester isn't doing what you think is appropriate, whether it be in the location of its servers, or by the fact that he is no longer associated with MGH, then, my goodness, find another board that offers what you need.


There is no other board that can match or add up to the one John has built 'doc' has just seen an opportunity to wean off some of the members with a look alike site that has much more leniency than the members heer even want.

He could have had a matching site of his own at any time in all the years Braintalk has been going.

He never showed any kind of sympathy for the members ther till he saw john having a problem.

If you buy the kindness and caring attitude then you will have a surprise when he finds all of the trouble on his doorstep.

Then the rules will change in a minute.

All of the rules had to be placed on the BT1 site because of the members and their actions.

None of them applied when I first started and we did a petition on it that went to DC with far less trouble than you can imagine given the last couple of years.

You need to think twice 'doc' because the site over there took years and years to build. It sure is not perfect but it is the best on the market and hopefullly it is not for sale.

So many have advice and think they can do it but you believe me you would have wilted 'doc' if you had of had to take what John took.

I have been to many sites since I have gotten sick and read till I am blue in the face all of them and the comments they are making. Some true and some unbelievable riddled with untruths and downright fiction.

It is my honest opinion that this site should close and if you still want to do it do it the right way.........on your own........ with your own and not in spite of all your protestations otherwise.

You put on your other site an invite to help John and he did not respond. Yet you did it anyway. Seems to me you didn't mean it to help John as much as yourself.

That is the way it appears to me anyway.

No offence meant

((((((Thelma)))))), I'm so glad to see you posting again.

I've told you before -- and I'll say it again -- you've been an absolute treasure to BrainTalk.org. I've seen you supporting people on a lot of different forums. We need many more like you.



I, for one, am glad that this little forum has been here for the past week or so.

A place to re-connect to people that we truly care about.

A place to discuss everyone's viewpoint. I'm glad that a lot of us have been able to air our concerns in a civilized environment. The best way to solve problems is to brainstorm -- I feel like we've been able to do that here.

I don't fault anyone for their viewpoint. I appreciate the people that feel the same way that I do. But, mine is only one point of view from a viewpoint that's colored by my history (and, I suppose also by my baggage).

I heard something the other day on TV -- a preview of one of those shows that's going to try to help couples reconnect. It's a phrase for people that are not seeing the same side of an argument or of a disagreement:


Each say that to the other and then start your discussions from there.

For me, everything that I've heard/read is OK. I can understand the reasons behind everything that's been said here. It's all *OK* :)

I had disconnected myself quite a bit from BT1 before it went down. More involved in getting my business going. I did like to check in once in awhile though. It's hard to believe for someone that's just joined an online community. But, you really do learn to truly care about and love the people that you come in contact with frequently. I hung around the Child Neuro forum 'cause I like kids and I like to do research. Before I ever knew what hit me, I was "in love" with all the great kids and felt connected to the parents and grandparents.

I don't think BrainTalk.org will ever disappear. I think it will change and grow and become something even more impressive that what it was before. All of us who have contributed financially and spiritually and emotionally to that growth and change will be part of whatever it becomes.

I don't think BrainTalk.org and John Lester has anything to fear from this little forum being here for now so that people that care about each other can stay connected.

Bless you all. Hugs.

Barb

((((Thelma and Moose))))

Now, that's the spirit. We bend, we flex, and understanding/acceptance is right around the corner.

There's plenty of "internet" for everyone. For those that want to build a better BT, there won't be any words that can keep them from their duty...however that is achieved.

Doesn't always require a financial investment [for those that don't have that ability]. Can be as simple as staying out of the fray, using the ignore button when applicable, and continuing to build support by "supporting" a non-hostile, online environment.

For those that simply log on, dump their unhappiness, and run...they will come and go. :eek:

i like to email whole pages to my fastmail.fm email and then i can archive emails and they get into winzip files and take up little space

www.fastmail.fm

free account

then i delete them from email but ive saved them to harddrive

i use outlook express to email them

what kind of fragile?
 

actually this would make for an interesting poll. since i was worrying about fragile posters in another thread i suppose i owe an explanation of what i really meant.

physically i am definitely fragile. i am elderly, crippled by a drunk driver for fifty years, and constant falls and my new Deep Vein Thrombosis make daily living pretty scary.

neurologically i am fragile. constant seizures, i never know when i am going to get on the wrong bus or burn the house down. my brain is simply not reliable.

financially i am fragile. the average monthly rent in my low income area for a single room is more than the minimum monthly SSI. fortunately i have a lot of credit, but one large vet bill could make me and the cat homeless.

emotionally? NAAAAAH. i am very tough emotionally. no family but blessed with friends. not at all fragile emotionally.

one out of four ain't bad.

I LOVE you, ((((((Annie)))))). You're such a breath of fresh air :cool:


It's taken me a lifetime and a TON of hurt to finally be able to acknowledge that yeah, sometimes I am fragile.

I'm emotionally fragile when I hear about/read about too many babies and children and young people dying too early.

I'm fragile when I don't get enough sleep and the big ole' fibromyalgia turns around and kicks me in the @$$.

I'm fragile when I stop and allow myself to realize that it'll be 40 years next month since my Brother committed suicide.

Yeah, sometimes I'm extremely fragile.

Other times, it's taken me a lifetime to learn (and to accept) how strong I really am. If I have to, I can face anything. Because the worst has already happened.

We all have many facets -- which is why I think we all have something in common with JEWELS. You whack a diamond in the right way and you can break it -- yet, it's one of the strongest materials around.

I don't mind admitting that I'm fragile sometimes. And I don't mind giving another a hand up when I'm not so fragile. (BUT, I still find it hard to accept people opening doors for me when I'm using the cane or the scooter :p )

BIG HUGS.

Barb

Hi 'Thelma,' I'm not sure how running forums out of my own pocket "helps me" in any way. I did it as a community service. (Believe it or not; it makes no difference to me.)

If I was watching a carpenter build a house and he ran out of nails, and I had a box of nails on me, I'd give him the box of the nails. I wouldn't just say, "Oh well, none of my business." Some people would, and that's fine. But it's not fine for me to do that.

John

so doc...i'm making choccy chip cookies.....i'm a tad short on choccy chips :eek: ( i know....who's a thunk it huh? )....got any extra in your desk? :p

i like what you have built here. yep. i like it just fine. i've peaked over at phych central too. awesome!

I wish I had some choco chips around!! Of course, if I did, I'd probably eat them...!