|
Post by Ms B. on Oct 28, 2008 9:31:40 GMT 10
Hey guys I've created a facebook group for Blue Butterflies Click meIt's not for discussion topics or anything (I've even expressed on there that if anyone wants to participate to join the forum), it's mainly to join more people together and direct them to us. So if you're on facebook and know any one who might be interested in BB's send them an invite to the group. Share the I'll be putting the link in the welcome center up top.
|
|
|
Post by Fae kitty on Oct 28, 2008 12:42:06 GMT 10
Good idea Bon. I love facebook lol
|
|
|
Post by Ms B. on Oct 29, 2008 14:18:16 GMT 10
Yeah I thought it's addictive and lots of people use it so why not make the most of it? Did you like the picture I used? For those who don't have Facebook here's the picture I used (also on our shelf).
|
|
|
Post by Fae kitty on Oct 30, 2008 7:02:51 GMT 10
Yep, i noticed the picture. Love it
|
|
|
Post by Ms B. on Nov 6, 2008 20:29:11 GMT 10
Guess what we have now? A Myspace account Been planning it for awhile. I'm not finished yet (still adding music and a few other things) and I'll be finishing up one of the skins I was fixing for the forum so it all matches. Here it is and if you have any ideas (including music or content) let us know
|
|
|
Post by Ms B. on Mar 23, 2009 18:41:17 GMT 10
Hey guys, Just letting you know (if you don't already) that I've created a facebook page and will be deleting the FB group eventually. Click here for the fan page
|
|
|
Post by Fae kitty on Mar 24, 2009 7:36:35 GMT 10
Hi Bon Do you think we could make the forum members only? i'm concerned about some people following me from facebook to here & i don't want these particular people knowing about anything to do with my health.
|
|
|
Post by Ms B. on Mar 24, 2009 8:39:44 GMT 10
Valid concern Ren and I'm not sure. I'll look into it and see what I can do
|
|
|
Post by Ms B. on Mar 24, 2009 8:41:55 GMT 10
Oh I forgot... In the meantime I've set it to unpublished so no on can see it, just till I figure out privacy issues.
|
|
|
Post by Ms B. on Mar 24, 2009 9:26:45 GMT 10
Ok... This is what's happening. The fan page is now on invisible mode due to me not being able to change privacy settings. The group is still up and running as a result, I won't delete it till I know what to do with the fan page. I honestly did not think of privacy issues (although I did blank out names and subjects on the screen shots I added) and now that it's been brought to my attention I am actually worried about it. I don't want there to be privacy issues. And then I got to wondering.... Why did I create a group in the first place? I think it may have been because I thought I needed to get the forum out there but do we really need to get more attention? Do you feel happy with the amount of activity we have? Do you think we're just fine as our own little group and don't need more members or would you like it to be more active? So I've started a poll and I want to hear what you really think (be open and honest people) and then I'll go from there with what to do with other accounts (facebook & myspace)
|
|
|
Post by Fae kitty on Mar 24, 2009 12:10:21 GMT 10
This is something i've been thinking about for a while & it has actually kept me from sharing some things that have been going on with me over the last month or two, because i don't want certain people who may follow me from facebook to here reading about my health or other things in general that i may post. I did change my facebook settings so that my groups are private a while back to avoid this though.
I like both the facebook group & fan page, but as i said privacy is a big issue for me & as i can only change my groups to private & not my fan pages (as far as i'm aware) i voted to keep the group.
I'm happy with the amount of members we have, but i'm also happy to have more. Having said that though, i'm not keen on us ending up with 100+ members or something like that, as i think when that happens to forums they lose their closeness & can become segregated, clicky etc.
|
|
susana
My Second Home
If I can build a bridge to somewhere, its better than a fast train to nowhere.
Posts: 511
|
Post by susana on Mar 25, 2009 8:20:40 GMT 10
Okay, this is just my own humble little opinion, okay?... I love the closeness of our group- - but really when you get right down to it there are only a little more than a handful of us who are that active & are close. We have many members who never post anything, who knows if they are checking in anonomously, feeling that they have a place, & contact somehow. Also the family & friends part never has, as far as I can tell, taken off. Which is a bit of a disappointment, to be honest. Not with YOU Bons, of course, or with our site, just with the significant others who have not taken the time or concern to get involved. With mine, he is just so systematically & categorically opposed to this whole thing (illness/symtomology/lifestyle changes) that, well, he wouldn't. But I think that just as with fellowships such as Alanon for families & friends of alcoholics, this website COULD provide so much support, knowledge, understanding, insight, help, & fellowship for THEM....
Anyway, Ren, certainly understand & agree with & echo your concerns.
Bons, I don't know. I don't want to see Blue Butterflies turn into a really public forum where we can't all talk candidly & have the closeness & intimacy we enjoy now. But then again, I think it's important that we're getting a message out, & there, for the curious & those with real needs, where they can check it out & decide where & if they belong. Does that make any sense?
This is my PLACE, and to a great extent, this is my LIFE... Like on Grey's Anatomy where Merideth tells her friend, "YOU are my PERSON!!! You have to be there for me, or what am I supposed to do?!!!"
Well, I hope this helps. I'll check out the poll if I get a chance. Sorta busy & crazy- - but "good-crazy" right now. - - - - -Susana
|
|
Ben
Extrovert
27/m/CFS for 7 years.
Posts: 394
|
Post by Ben on Mar 25, 2009 16:32:25 GMT 10
I'm not in a sound state of mind to make a judgement ;D, thats my excuse for everything these days. You think there are clown forums? having some clowns here would be funny. CFS clown forums?, i wonder if such a site exists? they would be sad little clowns if they didn't .
|
|
|
Post by Ms B. on Mar 26, 2009 17:37:08 GMT 10
Thanks everyone who have voted and shared their opinions and I want to try and reply to all everyone. Ren:I can understand that and it's one of the reasons why I made a lot of the boards private. I don't want anyone not feeling comfortable enough to post what they want. And yet it's something I didn't think of when making the fan page on FB. Sometimes I get these ideas and I implement them without really thinking it through (I'm a spur of the moment type of person) and then get carried away, but I'm glad you brought it to my attention because I don't know if I would have thought of it. Susana:At one point I was actually contemplating creating a sister forum for our support network so they could have one but after considering how much energy I don't have, how much it takes to run a health forum and everything else I realised I couldn't set it up and maintain it but if anyone ever wants to go ahead and do it (if you know someone even) and want to know how and where to start it I know how.... In the meantime I've left the board there just in case, but at the same time I can understand why it never became active - sometimes it's nice to have our privacy and I know that our support system want their own as well, you know? Ren:Susana:It's a bit of a catch 22 really when it comes to numbers of members. On one had it's good to have a small amount of active members in our situation because you get to know one another, you don't just feel like a number and can actually be heard (I hope people feel like that anyway), there are less arguments and other problems and you get to save some spoons. On the other hand a busier forum means there may always be someone around and that's really the only thing I can think of because I think either a small community or a large one can be fun and both have their own benefits. Only thing is though, I decided that when I created the forum, if it ever got busy I wouldn't be running it anymore. I'd still be the admin but I wouldn't be doing anything, I wouldn't even check posts in an admin capacity. Anyway - I digress.... Yeah I wanted to get a message out there but it's can be a really hard thing to do. I have lots of ideas to implement but apart from lack of spoons I could get people to do it for me but then I'd have to constantly check up on them to make sure they are sticking to what the forum is about essentially. I'm probably digressing so I'm going to stop myself and just let you all know that I will keep the facebook group but I've changed the settings so the only way people can be apart of it is by request or if they are invited and I'll be deleting the fan page. It might take a few days though because I'm a bit dazed and confused at the moment (can you tell by my rambling?)Ben:I don't think they'd be happy anyway even if they had a forum. I don't think clowns with ME could be. They'd probably turn into comedians and really good ones too!
|
|
|
Post by upnorth on Mar 26, 2009 22:50:18 GMT 10
Thanks for taking the time to respond to everyone Bonnie. The privacy issue is somewhat important for me too.
Ok not to change the subject or anything Ben, but your profile picture is SOOOOO cool. What is it? A painting?
|
|