sandymbme Posted July 12, 2011 Report Share Posted July 12, 2011 I don't know how on topic this is....I recently joined an EDS group on facebook, and it has very quickly realize how special this forum is. People were openly cursing at one another, giving often inaccurate advice in order to sell supplements, telling people to disregard their doctor's orders. I know we have different points of view here, but in general everyone is very supportive of one another, and very positive in their communications. So just a quick thanks for being awesome!Sandy Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 12, 2011 Report Share Posted July 12, 2011 I agree, Sandy. I am so very grateful for this forum with its civility and wealth of knowledge. I know I would not be doing as well as I am now without it. Quote Link to comment Share on other sites More sharing options...
lieze Posted July 12, 2011 Report Share Posted July 12, 2011 : ) the longer I'm away from the place I was at the more I see it as a 3 ring circus. Love this group.I have not opened my messages from that group in three weeks. Finally got one from the admin so I opened it and then looked at all of them.One stated and I totally believe it.Hi my name is sparky-I was being harassed by a small group of people and when I reported it to the admin he deleted my account-can you please send him a note and get me reinstated?Totally believe that but obviously I did not get involved.It's how backwards it is there.While I was there just for kicks I checked our leader panel and my dear friend Sally is no longer aboard.She had a huge heart. The nice people just end up getting walked all over and either get their feelings hurt over and over or just end up leaving.It really is a mob scene out there in the Internet world and I don't really understand why.Feeling free to talk about anything you want and express feelings is one thing....something I fought for...but people take it to a level that is just rude and obnoxious.I couldn't hang with it.I'm also happy here and I don't mind if my posts get edited now and then-it really doesn't bother me.I feel safe here and I hope everyone else does too.I hope everyone finds the help they need free of that horrible stress.. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 12, 2011 Report Share Posted July 12, 2011 I totally agree. This group has an amazing bunch of members. So supportive, so kind and very very smart! I have learned so much here. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted July 12, 2011 Report Share Posted July 12, 2011 I agree also. A wealth of knowledge and true caring. I am so happy that I found this forum. I would be doing much worse if this wasn't available. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted July 13, 2011 Author Report Share Posted July 13, 2011 The thing I found really disturbing was the level of both misinformation and incivility. People were trying to market all kinds of snake oil, going so far as to tell people to stop seeing their doctors if they were not supportive of them taking supplements. And heaven forbid you politely disagree with someone's opinion! Then you are setting yourself up for attack! I was just stunned! This was the first group I found, 4 years ago (in August it will be 4 years that I have been very ill.) shortly after my diagnosis. The nurse who explained my TTT results gave me a list of websites they recommended. As this was the Cleveland Clinic suggesting I look for further info here, it seemed a good place to go. And you guys have never let me down, even when we disagree! Just such a change from what I was used to! My EDS diagnosis is still very new, so I was looking for support and more info, the facebook group was a serious "fail"!Sandy Quote Link to comment Share on other sites More sharing options...
sugartwin Posted July 13, 2011 Report Share Posted July 13, 2011 There are good and bad EDS Facebook groups. They are about as good as how well they are moderated. Any group is subject to be encroached upon by internet anarchy if it is not closely administrated as this one is. There was someone here a few months ago I think who was trying to market something and he was shown the door as I recall. Not that we aren't fab people (we totally are) but there are fab people on Facebook groups as well, when moderators exist to keep the bad eggs out. Quote Link to comment Share on other sites More sharing options...
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