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Maidenminx

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Before I left facebook, I was a member of this most wonderous group. Since leaving, I have missed them terribly, and considered going back to fb just for them. Is anyone here a member?
I loved it for the humour. You could say or do almost anything, all manners of swearing, hilarious jokes - a lot of them about epilepsy, and fantastically supportive and informative when need be. I miss it.
 
I never understood why there was a need for facebook, you can find everything your talking about here.
 
Am on FB but have not checked this one out. Sounds interesting but would have a problem with anonymity?
M
 
IMO, this IS the best and most useful online Epilepsy group. I can find friendly folks plus poetry, laughter, and games. Go to "The Lounge" for this.
 
Maidenminx said:
I loved it for the humour. You could say or do almost anything, all manners of swearing, hilarious jokes - a lot of them about epilepsy, and fantastically supportive and informative when need be. I miss it.
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I get all this and then some from this site - with the exception of getting "all manners of swearing", for which I appreciate the forum rules and moderators. I also like the anonymity of this site.
 
Well this is my first and only epilepsy site. It grabbed me from the beginning and kept me spellbound as I identified with threads and posts and, for the first time, I no longer felt alone or ignorant regarding my epilepsy. This site empowered me to face the medical profession. No library could do this for me before the internet. Here, I felt at home and people made me comfortable and I came out of my iron clad shell.

I dip in and out from time to time - other things take priority; epilepsy needs to sleep quietly in the back of my mind while I am seizure free. I'm still confused and not widely knowledgeable regarding epilepsy so I'm not one to post where others are more apt at doing so.

This site, through the years, has proven it's right to stand tall and proud - out there as one of the best, if not the best epilepsy forum(s). As for the 'anonymity' of the members of CWE, true, some funny names, some cryptic ones(?), some ordinary first names, but all very familiar and endearing to those who frequent these pages and get to know members old and new. There are here people who shout louder (with passion) and softly with conviction. No swear words, we moderate ourselves to some extent and we have moderators to help out when things get bigger than we as individuals can cope with or curtail.

Facebook has it's place. CWE, to quote Cint, "IS the best and most useful online Epilepsy group".
:)
 
I didn't mean to imply that this group isn't wonderful. It is a wonderful resource, and I wouldn't have returned if it wasn't.
As for the anonymity factor, it's a private group, so your friends can only see what you post there if they're members too. And the members can only see your timeline if they're your friends, assuming it's private. Also, if you're not careful with what you say just because you have a silly name, well, that's just silly.
I understand that some people are offended by swearing, but that was the beauty of the page. You could say or do what you wanted, as long as you weren't being directly nasty to anyone. If you saw something you didn't like, you were encouraged to just keep scrolling. Because of that, it was (is) a very relaxing place.
I, personally, have never stuck to just one place for support and information. I look for whatever appeals to me.
So far, I have found the lounge to be rather inactive.
Once again, I didn't mean to offend.
 
Maidenminx said:
I didn't mean to imply that this group isn't wonderful. It is a wonderful resource, and I wouldn't have returned if it wasn't.
As for the anonymity factor, it's a private group, so your friends can only see what you post there if they're members too. And the members can only see your timeline if they're your friends, assuming it's private. Also, if you're not careful with what you say just because you have a silly name, well, that's just silly.
I understand that some people are offended by swearing, but that was the beauty of the page. You could say or do what you wanted, as long as you weren't being directly nasty to anyone. If you saw something you didn't like, you were encouraged to just keep scrolling. Because of that, it was (is) a very relaxing place.
I, personally, have never stuck to just one place for support and information. I look for whatever appeals to me.
So far, I have found the lounge to be rather inactive.
Once again, I didn't mean to offend.
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I'm on facebook but don't get on it very much or even post. I just hate the fact that most people have to tell you what they've done from the moment they woke up till the moment they went to bed. Yes there is some funny stuff on there that I like. There is some stupid stuff on there too and at times I don't even know what they are talking about.

There is a good bit of swearing on facebook but I don't really care to have someone say a swear word every other word. There are many people who feel the same way on here which is why it is a moderated web site.

If you want to talk about epilepsy on facebook pretty much no one is going to know what you are talking about. If you have questions about seizures or meds then you aren't going to get an answer. That's what CWE is about - epilepsy. In the lounge mostly epilepsy isn't discussed but I know what's on there is nothing like what people post on facebook.

I like the anonymity of CWE very much. I'm not embarrassed that I have epilepsy but I don't think the whole world needs to know unless I tell them. In general someone who doesn't know a thing about epilepsy and seizures is probably going to think that when you have a seizure you fall to the ground and start shaking like crazy. They don't realize that there are several different types.

If you want to talk to people you already know, went to school with or work with for example, that's what you do on facebook. You can make some great friends on CWE. If you'd like you can give them your actual email, phone number or what ever else you can talk about anything and in any way you want to. If you do this though CWE is not responsible for anything that happens off the web site.
 
Maidenminx said:
Once again, I didn't mean to offend.
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I don't think you offended anyone :)
But as you can gather there are some big fans of this site who see many advantages over FB as well as other epilepsy forums. We all need support and friends, and if FB does that for you I think that is great! Having said that, though, I hope you find advantages to CWE. The moderators are a great benefit to the site, and jump in when issues become "inflamed", incorrect (politically or otherwise) and they add their valuable knowledge and experienced insight when information is requested.
Looking forward to seeing you around!
 
I don't think you have offended anyone, Maidenminx. People are just sharing their views.

Maidenminx:
I was a member of this most wonderous group. Since leaving, I have missed them terribly
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Can you not go back to your FB group?
:)
 
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