lissy Posted November 8, 2009 Report Share Posted November 8, 2009 Anyone know of any????Thanks Lissy Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 8, 2009 Report Share Posted November 8, 2009 The NDRF forum offers chat. Quote Link to comment Share on other sites More sharing options...
kayjay Posted November 8, 2009 Report Share Posted November 8, 2009 I was never able to get on their site. Let me know if you have success. Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted November 8, 2009 Report Share Posted November 8, 2009 Apparently I'm still awaiting approval over there a year later...I'd be interested in a chat, too! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 8, 2009 Report Share Posted November 8, 2009 I don't know if you're on Facebook, but there's a group called POTS and Dysautonomia Awareness that has live chats now and then. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 8, 2009 Report Share Posted November 8, 2009 I believe some folks here have met privately online to chat... if you want to do something like that, you can post your announcement and/or request on the Chit Chat section Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 9, 2009 Report Share Posted November 9, 2009 NDRF has been shut down for a month (message boards) I don't know what their deal is (rarely go there) but don't count on that site for anything. I emailed them weeks ago and never got a response?!some people set up their own chat sites but I can't use them. Folks go crazy & like to use FANCY sized/colored fonts and they give me vertigo. (Yellow, pink, fonts and tiny or over sized things with moving emoticons...ugh)I need same sized fonts and dark colors to read on a moving board. Just too dizzying for my brainstem issues. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 9, 2009 Report Share Posted November 9, 2009 As far as the NDRF forum, a forum member wrote her own book on her dys. experience, and kept using the forum daily to talk about her book and where she was going for a reading of it, etc., ad nauseam! She was relentless! And then she used a lot of religious-speaking in all of her posts. It just ruined the forum, where all of us just wanted to talk about our conditions, testing, questions, etc. I wish they would get it up and running again. I can't believe one person "hijacked" the forum and the owners just shut down the whole thing instead of banning one member.I kind of don't like the idea that someone that could bring chaos to a well-known dys. forum is out there promoting herself as a representative of what a dys. patient is like and goes through! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 10, 2009 Report Share Posted November 10, 2009 well sue, I kinda knew the story, ..just didn't want to put NDRF on blast! but it's NOT a professional way to run a forum for those that depended on it. However there was a mass exodus last year but I've NO idea where folks went unless it was here or an old yahoo group (hate yahoo sites)Plus not answering emails..are you kidding me? they should at LEAST put up notice MB discontinued. I know a year or so ago when there was trouble they were thinking of doing away with the support forum. Quote Link to comment Share on other sites More sharing options...
skyblu Posted November 10, 2009 Report Share Posted November 10, 2009 You can chat on facebook. But I don't think they provide the option to chat with more than one person at a time. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 10, 2009 Report Share Posted November 10, 2009 I have a great deal of respect for what NDRF has done and I choose not to be upset with them-- running a forum, even unmoderated, requires time, money and energy. I know Linda, the founder of NDRF, has dysautonomia, and it was pretty public that her husband also had major health issues over the years. When you're not feeling well, even returning email may not be a possibility. My hope is that they are both doing well and that they are just taking time and taking stock of things after the hijacking and deciding what to do next. I hope they will reopen b/c that site does offer other options, such as chat. I like that there are various options out there for people and even though I'm not "affiliated" with NDRF, I still checked in on the site about once a month, and still refer folks to the dysautonomia handbook download.I have to give my unending thanks to the volunteers here at DINET, as well as the membership for helping all the moderator keep on top of the kind of issues that happened on NDRF's site. Also, my thanks to each one of you that's sent us a note of concern when something unusual is going on -- that's what the "report" button is for b/c we've gotten too busy a place to possibly read every single post that people make. Over the past few months, the forum traffic has gotten very busy and I personally really appreciate it when I'm given a "heads up" about a potential issue. I know our other moderators would agree that you, the members here, contribute to the fact that this forum is still here and has been able to be in consistent operation since starting out in ...hmm... 2002? 03? Quote Link to comment Share on other sites More sharing options...
EarthMother Posted November 10, 2009 Report Share Posted November 10, 2009 And a deep bow to YOU Ms. Mouse as all of us here are so appreciative of your efforts. Amazing to think ... that by moderating a 'social forum' you have actually directly impacted the ability for people to get a diagnosis, open new possiblitites for treatments, raised hope and endless support within an otherwise lonely and isolated illness. Our unending thanks go out to you.I enjoy facebook as a way to connect 'live' with folks. Admittedly, I play some of the 'game applications' like YoVille. But it is so cute to see other POTS PEEPS in there 'walking around', 'going to the beach' and having fun. It would be so cute to have a YoVille POTS party were all of us could meet up and play one night. lol Quote Link to comment Share on other sites More sharing options...
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