sad !

[Dragongiraffe]

I have a silly question which maybe Bernard or one of the other moderators can answer for me.

With epilepsy forums where you need to have epilepsy to join the forum how do the moderators know the person really has epilepsy?
Would they have a serious of questions set out (eg - when did seizures start, what type of seizures)?

Well, they don't, but I wouldn't lie about something like that. And yes, there are some more questions to answer.

 

[Dragongiraffe]

@matchu: you know, I almost feel discriminated here. You hit the nail on the head for me...lack of empathy and understanding !!! Thanks for your input, matchu !

 

[Dragongiraffe]

Back when CWE was first launched, there were very few independent epilepsy discussion forums around of any size or activity. The few large, active forums were all associated with non-profit groups and/or doctors/medical institutions. As such, they had (still have to some degree) some peculiar (to my thinking) rules and requirements.

With respect the forum Dragongiraffe was complaining about, you weren't around back in the days when hooligans where actively targeting epilepsy forums. There was a movement to improve security in most forums and the way it was handled varied wildly. I like to think that CWE implemented the most common sense and least intrusive measures, but I would, since I implemented them. onder:

The uber draconian method employed by Dragongiraffe's forum of interest was likely also designed to help curb other forum problems as well, but IMO, that's where a good moderating team makes a world of difference.

Every forum has it's own "voice". Some are more serious, some are more chatty, some are more regulated/controlled. I (and the moderating team) tried to fashion a place here where most everyone felt welcome in discussing most any aspect of epilepsy in relative anonymity.

As English is my second language I am experiencing some difficulty in understanding excactly what you are referring to in your second paragraph.

I would appreciate some clarity or elucidation.

Furthermore, & in conclusion, I would refer you to the post, of Birdbomb, to me, & invite your further comment in your capacity as Host. Hopefully this may dispel any more mistake, misunderstanding or misinterpretation. Sorry about this, Bernard.

 

[Meetz1064]

Well, if

you click on the link in the second paragraph, it will help explain things.

To make it simple and short, there is a subset group of people on the 'Net, callled the /b/tards who decided to attack various E forums. They posted messages with links that set off many members that were photosensitive due to flashing graphics, etc. There were many of them flooding the sites at one time, and their intent was to literally set E patients into status E. What the result of that was, they didn't care.

As a result, many E forums changed how you were able to get in. You have to meet a certain number of posts in many now to post a link (same here) which now discourages spammers. And if you want to post one prior to being able to, one of us mods will check out the link, then enable it.

Some E forums became super strict about how members accessed their site, and what words are even allowed to be used now. Some of these E forums are tied to organizations, such as EA in the UK, EFA in the US and others all over the world. It varies.

What Mr B has done is set up rules for the forum--no politics, no religion. That's to keep the dinner party running smoothly. We mods ensure that that happens--and if we see an image posted that may set off one of our photosensitive members, of which we have many--we take it out immediately. We're not going to take the risk of setting someone off into status E because of a flashing graphic. That's just the way it is.

There was one night about 2 years ago where CWE was badly attacked by the /b/tards, and several of the mods at the time suffered for trying to stop the attack. Now that the registration process is changed a bit, the attack possibility is much more limited, and with the way we mods do our jobs, 99.99999% of the time, the rest of the members have no clue that spammers have shown up--and we usually catch the flashing images before anyone else so no harm is done.

OK, I'm done now. Sorry for the novella.

 

[Rae1889]

So there have been times when we were attacked? recently? wow, what jerks.

I wonder what fits their criteria for who gets their wrath or help? As they seem to be hypocritcal about it. They attack the suicide kids family, but help the family of a girl dying of an illness her mother died from. Then they attack an epilepsy site. Seems a little backwards.

Also from what it seems, you cant even talk about them without them knowing.

 

[Chris515]

So there have been times when we were attacked? recently? wow, what jerks.

I wonder what fits their criteria for who gets their wrath or help? As they seem to be hypocritcal about it. They attack the suicide kids family, but help the family of a girl dying of an illness her mother died from. Then they attack an epilepsy site. Seems a little backwards.

Also from what it seems, you cant even talk about them without them knowing.

I'm unsure of the psychology of the /b/tards. I think they help people and hurt people just because they can. I believe the feeling of power and recognition of their peers is a big motivation of what they do.

I think they like to hurt people and cause trouble, whether the victims are good or bad. It's almost like a gang culture and they plan big attacks just to impress eachother and to show their power and ability to do anything they want, without repercussion.

 

[Dragongiraffe]

Thank you, Meetz, for the explanation ! Now I understand. I did in no way mean to criticise Bernard, I just really didn't understand it, it doesn't happen a lot and I hope no one took offence. Nothing was further away from my mind than that !!!! I am grateful you took the time of explaining it in full to me, thank you Meetz.
@ Rae and Chris: thank you for your input too !

 

[epileric]

I wonder what fits their criteria for who gets their wrath or help? As they seem to be hypocritcal about it. They attack the suicide kids family, but help the family of a girl dying of an illness her mother died from. Then they attack an epilepsy site. Seems a little backwards.

I have to agree with Chris. I think they just like to attack people.

You have to consider that they didn't really "help" the family of a dying girl as much as hurt the people who were hurting them.

 

[BuckeyeFan]

IMO the b/tards/ are a whole range of people operating under the anonymity of the net. I am sure that some of them are border line evil while others are ordinary folks who are doing things on the net that they would never do in real life.

Back to the original topic. This site is great because I serve the best coffee :cheers: and the occasional beer :beer: , (though not to meetz or birdbomb fft

 

[matchu]

I havn't had a cup of coffee in quite some time. I just may have some today.

 

[Bernard]

... With epilepsy forums where you need to have epilepsy to join the forum how do the moderators know the person really has epilepsy? ...

The site that prompted this thread requires members to list their doctor, full name and address. They then must receive a letter in the (snail) mail which they must sign and return to verify they are who they say they are and live where they say they live. Not sure if they actually check with the doctor to ensure they are a patient, but it wouldn't surprise me (they aren't in the USA, so I'm not sure if there is an equivalent of HIPAA laws over there).

As English is my second language I am experiencing some difficulty in understanding excactly what you are referring to in your second paragraph.

I would appreciate some clarity or elucidation.

I believe the forum you were complaining about enacted their strict requirements as a result of the problems numerous epilepsy forums had with hooligans a few years ago. CWE took a different approach to fix the problem.

Furthermore, & in conclusion, I would refer you to the post, of Birdbomb, to me, & invite your further comment in your capacity as Host. ...

I'm not sure what you are asking for me to comment on. Everyone is welcome here at CWE - whether they have epilepsy, have family with epilepsy, know someone with epilepsy, suspect they might have epilepsy, are a medical professional or have some other interest in epilepsy not covered therein.

So there have been times when we were attacked? recently?

Since the time that we put the safeguards in place, the attack attempts have been very sporadic and mostly fizzle out quickly with just one or two hooligans involved.

I'd like to point out that /b/tard is a term with a specific focus. Not every attack attempt specifically involved /b/tards proper (ie. folks from 4chan/7chan /b/ boards), which is why I refer to them as hooligans. Griefer is another appropriate label that is more generic than /b/tard for the hooligans.

 

[knothing]

Outside of the very intrusive address part having a place where the only people to talk to have Epilepsy is good in some ways, occasionally.

 

[Meetz1064]

Hey now, Buckeye. That's not nice. Why not me?

 

[Endless]

Hey Meetz and Birdbomb,

I make a KILLER Margarita, and I definitely serve you two! Of course, you are bringing the Tequila and the lemons, right? lol...

 

[Bee91]

I remember...wasn't it something about ebaumsworld that was doing it?

 

[Dragongiraffe]

reply to Bernard's post

"I'm not sure what you are asking for me to comment on. Everyone is welcome here at CWE - whether they have epilepsy, have family with epilepsy, know someone with epilepsy, suspect they might have epilepsy, are a medical professional or have some other interest in epilepsy not covered therein."

I didnt mean anything buy it, Bernard, just that I didnt understand your response, and I apologised for that. Meetz has now made it clear for me, and no further questions on this one. Thank you for the fast reply, and again sorry if I seem to upset anyone (you) here. It was NOT my intention. hope we can leave this here and now.

 

[Birdbomb]

<snip!>This site is great because I serve the best coffee :cheers: and the occasional beer :beer: , (though not to meetz or birdbomb fft

^^^^This^^^^ fool better NOT serve me that mud he passes off as coffee or his beer that you'd swear was deer urine. He better be serving my Dom Perignon Rose 1998! Now shag your tush back to the grill, I want my steak RARE. Don't forget the corn-on-the-cob or baked spud! (feel free to move THIS conversation to our regular haunt.)

Endless,
Mmmmm Margaritas! Lime please!
I'll do one better, I'll bring the worm! I had 2 beautiful Blue Agave (the cactus that Tequila is made from) growing in my front yard until a few weeks ago. That damn insect killed them and now all we have left are dried up fronds and plenty of worms.

Bee91
EVERYBODY blames ebaums. LOL Sounds good to me!

Meetz
As ever so eloquent! Thanks. Now let's go to Endless' house for Margaritas!

Dragongiraffe
My apologies for any misunderstandings. I forget the language difficulties because you speak English so well. I will try to choose my words more carefully.

 

[Meetz1064]

Once I

get back from the meeting I have this evening I will be WANTING those margaritas, Endless! I hope they're YUMMY!!!

Dragongiraffe, don't stress. Why don't you come hang out with us at the regular haunt that BB is talking about so we can bug the guys some more about making us PROPER steaks, burgers and brats? Mine are medium rare, thank you! THEY'RE supposed to serve the women! Anyone's welcome to come! Hehehehe...........

Buckeye, look at what you stirred up........:roflmao:

*whistling as walking away thinking--I wonder what this thread is gonna look like when I get back tonight*

 

[Dragongiraffe]

*whistling as walking away thinking--I wonder what this thread is gonna look like when I get back tonight*[/QUOTE]

now that I like, style Meetz style !!!!!!!!!!!!!:roflmao:

 

[Dragongiraffe]

Dragongiraffe, don't stress. Why don't you come hang out with us at the regular haunt that BB is talking about so we can bug the guys some more about making us PROPER steaks, burgers and brats? Mine are medium rare, thank you! THEY'RE supposed to serve the women! Anyone's welcome to come! Hehehehe...........


ok, Meetz, you're on ! Let's give 'em h**l !:banana: