POISCENTER
POIS Life Style => Lifestyle Diary and POIS Summaries => Topic started by: serotonergic on November 03, 2014, 01:08:32 AM
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Would anyone like to talk about POIS/offer each other support through a chat service? I feel like it would be really beneficial.
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There were a few other posters here who were discussing this idea recently, but don't know if it went any further. I just tried to search through some posts to see if I could find it, but can't.
Perhaps someone else who knows about this can contribute something here.
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I'm looking into a way to do this that makes sense. There are ways I know to make it happen, but we would all have to agree to meet at a preset time. I'm searching for a way that people can use popular software/websites that have a group function where you can see who is online and who isn't. Then also be able to prompt everyone online at once to come join.
I'm looking at Google right now, and asking on Reddit
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I'm looking into a way to do this that makes sense. There are ways I know to make it happen, but we would all have to agree to meet at a preset time. I'm searching for a way that people can use popular software/websites that have a group function where you can see who is online and who isn't. Then also be able to prompt everyone online at once to come join.
I'm looking at Google right now, and asking on Reddit
Nightingale, Yahoo Groups has a private chat room function. I know of a few rare disease groups that utilize a Yahoo group specifically for the private chat room. You might want to check it out also -- https://info.yahoo.com/privacy/us/yahoo/groups/details.html.
Stef
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yes we must chat !!!
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I'm looking into a way to do this that makes sense. There are ways I know to make it happen, but we would all have to agree to meet at a preset time. I'm searching for a way that people can use popular software/websites that have a group function where you can see who is online and who isn't. Then also be able to prompt everyone online at once to come join.
I'm looking at Google right now, and asking on Reddit
Nightingale, Yahoo Groups has a private chat room function. I know of a few rare disease groups that utilize a Yahoo group specifically for the private chat room. You might want to check it out also -- https://info.yahoo.com/privacy/us/yahoo/groups/details.html.
Stef
Thanks Stef,
A variety of tools might be needed. There are 4 of us on Skype so far, perhaps we can talk this weekend. Need to consider we are a global community, too! Time zones :)
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I've sent out the message to my contacts to see if 11/16, Sunday, would that be a good day to talk.
Please send me a private message, or find me on Skype. Search for "thomasslowikowski"
I think it would be good to moderate the talk (without getting in the way too much). We have a lot to talk about, and that ends up with arguments sometimes especially when it comes to what WE think the cause of POIS is. I think this should be avoided during a friendly exchange, which is what I and I'm sure everyone else is looking towards :)
Any thoughts?
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I wanted to write here briefly that we had our first successful meeting on Skype! There were a handful of us, but it's a start :)
It was great to get to know each other in a way that we really can't do just through writing! I know there were some who were not able to attend who wanted to, so I would appreciate feedback on when would be best for you to attend. Today we met at GMT 15:00. Is this a bad time for anybody? What time might be better? Is there a better day for you? Just say here!
I wanted to make a rule for the group before we got started, and those in attendance agreed it was a good one: We will not discuss what we think the cause of POIS is. There is a lot of controversy around this topic, and I don't think it's necessary or appropriate for our purposes of meeting together to support each other. Therapies and such are fine to talk about, and we shared some interesting ones (anyone find wild caught oysters to reduce their POIS symptoms??).
And just so it's known, I kicked a person from the group and blocked them. It may have been Kima. There was nothing this person added except their feelings that a certain researcher who is trying to help us is an "idiot". This will not be tolerated, and I'm glad I weeded this person out early. Grrr!
My Skype name: thomasslowikowski
Find me and I will add you to our contact list!
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And just so it's known, I kicked a person from the group and blocked them. It may have been Kima. There was nothing this person added except their feelings that a certain researcher who is trying to help us is an "idiot". This will not be tolerated, and I'm glad I weeded this person out early. Grrr!
Hurrah!!!
Great job on Skype AND on K The Fool! :) :)
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lol I dunno what that dude's (Kima's) problem is. We're all on the same team with the same goal: to cure POIS!
All of us want each other (including Kima) to get better. Please Kima behave properly. There's no reason to call names...esp. not to someone who's trying to cure you.
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Would you guys like to schedule another Skype meeting? Perhaps within the next 2 weeks? I'm Joe from the last meeting if anyone didn't know that.
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Yes, lets schedule one! Been a busy few weeks, so I havn't been able to coordinate.
This Sunday, December 7th maybe?
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Please Kima behave properly. There's no reason to call names...esp. not to someone who's trying to cure you.
Doubtful he will.
Stef, Daveman and I have all confronted him -- including his choice post at NSF, calling Dr Komisaruk the "b----" word!
Sigh.
Many thanks for ejecting him!
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Yeah, you're probably right demografx. It's unfortunate. [I didn't eject anyone though lol! I had nothing to do with that. It was 'prolly the right call though given his behavior.]
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Sorry, Prancer, I wasn't clear; I was referring to Nightingale's ejecting him from the Skype session.
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And just so it's known, I kicked a person from the group and blocked them. It may have been Kima. There was nothing this person added except their feelings that a certain researcher who is trying to help us is an "idiot". This will not be tolerated, and I'm glad I weeded this person out early. Grrr!
(http://c.asstatic.com/images/1286554_634601432754793750-1.jpg)
Nightingale, I'll ask Daveman and Stef if we can start a budget for you for several Skype Ejection Seats.
But Prancer is first in line for a Time Machine! :)
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Ha! No problem demo! :)
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Whew!!
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Sorry I didnt get to organize a group this weekend to talk, with the holidays and some new responsibilities in my life my weekends have become more full!
Of course, those that got the invitation to the first meeting on Skype also got to see the other member's names. Feel free to contact each other, right?
If you live in the United States, I would be able to talk to you more easily. Or if you are a late night person in the Eastern Hemisphere :) I'll try to be on Skype more often this week, please say hello if you see me there