Over 100 posts in 24 hours! And the Facebook group.

[Dodger67]

:fyi:
We Rock!!!:sign0021:

I have just counted the entries posted in the 24 hours up to 09:00UTC today (13 April 2010) and the total is <drumroll> Ta Dah!... 103! (In 27 different topics)

The period I chose for my count is entirely arbitrary - it just happens that was the time when I started counting.

I hope we have enough storage capacity on the server for all this activity. The archive of knowlege and experience recorded here is too valuable to lose!

[angel]

I am not sure who is running the facebook account but i have seen some wall posts on some of our topics. I wonder if that has helped drive up the traffic.

Angel

[Dodger67]

Why has nobody told me that we have a facebook page? <sulk!>
Just found it - joining...

[angel]

I am surprised you didn't know. I can't remember how i found it but only been on it about a week or so.

Angel

[Dodger67]

How do we get the facebook "fans" to come here and actually participate instead of just looking from a distance?

[misty]

There's a link to our website on the facebook page. I've seen a few posts here that say they found us through there.

[Dodger67]

Whoever started it should have posted about it here. In fact there should have been a discussion about it before it was started.
As we join the FB group we give up some of our anonimity here.
Now you all know my surname, who some of my relatives are etc. Now all my FB friends have access to private information about me that I prefer they don't know.
I've just convinced myself to leave the FB group immediately!

[angel]

Good argument dodger, I left too.

Angel

[Dodger67]

Just moved this thread out of "Off Topic" - because it isn't!

The Facebook group violates the privacy through anonimity that we have here - agree or disagree?

[LillyPie]

I was just reading this and I dont quite understand??? So if you are a member on facebook anyone can see what we talk about on here???

[Dodger67]

If I join the facebook group you can see me there. Then you go to my facebook page. There you see my real name, you see my friends and relatives that I have listed. From posts on my "Wall" you find out what pub I go to regularly.

That is not really such a big deal you say.
BUT it also works in reverse!

All my facebook friends see on my page that I have joined a new group.
They already know I use a wheelchair - that much is public knowlege anyway.
But now they become curious about this new group I have joined.
They see its about a condition called SB - Oh so that's what's wrong with Roger!
Then they follow one of the links to this site and just by reading the "open" sections they learn that I am in fact incontinent.
That is not something I want most people on my FB friends list to know.

[sean]

Not getting it either....are my posts available outside SBC!?

[LillyPie]

I think the only posts that are private are the Children W/ SB section... I think... HUM... Yea IDK if I want some of the ppl on facebook to see conversations I have had on here.. especially if its people I dont know who dont know anything about SB or know my family personally.

[Dodger67]

No, but your Facebook friends - most know you in "real life" - can see that you have joined a new FB group. They follow the links as described in my reply to Lillypie and arrive here and start reading their friend Sean's posts.

Our only protection here is the fact that nobody can link the pseudonyms we use here to our real identities - unless we choose to tell them.

That is why I am so insistent about using PM only to share identifying information with each other here - as happened in the previous thread about Facebook where some of us chose to invite some others of us to connect on Facebook. I in fact do have a few of the members here on my FB friends list - but I'll never tell here who they are and conversely I will never reveal what I know about them from here on Facebook. For example I will never post a question on XXXXX's FB page about how the urology appointment went. That topic stays here!

[Barb]

Ummmm, hmmmmmm, OK, I am the culprit behind the facebook page and I did post some things there this week which is probably why the traffic has gone up. I could have sworn I posted here about it but now I can't find the thread. I know I have mentioned it in more than one email (including the one this week)

I guess I did not think of it in the way Dodger has put it.

What do you all think?

Anything that is not in the adult or childrens section is accessible to anyone on the net and is all over google. The site has always been set up that way. So I honestly didn't think about the issue of FB friends seeing you belong here but I am now. It doesn't violate any type of privacy policy here because there was nothing (and never would be anything) posted on FB that wasn't out for public consumption anyway. The issue of privacy is actually on FB for showing your friends what groups you join. I would think there is a way to change that in their privacy setting so I am googling for it now. (Edit: found a tutorial to stop FB from telling your friends what groups you join: http://www.allfacebook.com/2010/01/facebook-recent-activity/)

Is the issue just that by being a fan it links you to the site? Would the solution be to not be a fan?


Can I get some thoughts here??? I had initially put up 3 posts on the FB page. I just went and took 2 down. The other has some comments on it.

[Gymp]

I don't know if I like this...I'm thinking not.

Sorry Barb

Gymp

[Barb]

It's OK Gymp. I never thought about it in the way that Dodger put it before but the more I think about it the more I think the solution is simply don't join the FB fan page if you are uncomfortable linking yourself to the site because the reality is that there is absolutely nothing on the FB site that is not available in google and the choice is yours as to whether or not you join.

To me, that is something that everyone can decide for themselves. I see the choices as:



Have nothing to do with the FB page
Join the FB page and change your privacy settings to not show your friends
Join the FB page and have one more way to connect.

There are currently 265 fans of the page and I see it as one more way we can connect and offer support.

Also, the reason that the adults section and the children's section is closed off to prying is so that you have a place to post 'sensitive' topics without your neighbor reading it. But the reality is that your neighbor can just join the site and read it that way too (well, they would have to get approval for the adult section from Dodger).

We can certainly discuss closing off other sections of the site but then it limits people who need our support finding us.

[Lifeisgood]

Hi Everyone,
I have to say that I too was a bit surprised when I saw that some of the posts from here were on the FB page as well. It made me feel somewhat uneasy. I purposely did not sign up for it or become a fan because I like my relative anonimity on this site and fear that somehow people will put 2+2 together and have access to all my SB woes if I make that FB / SBC connection. And even without the FB page still I am somewhat paranoid that someone I know from the community will come across the SBC site and somehow (even though it is quite unlikely) figure out who I am. So for those reasons, I am not going to become a fan of that page or post on that page directly. However, I do think that the benefits of having that page are that we could reach a whole new subset of people who could use support, and that is really cool. I am just going to keep my real name out of it. :)

[Barb]

and I will make sure that only posts from the news area make their way over there :happy065:besides the SBO one that is already posted

[Lifeisgood]

Thanks Barb! And thanks for all that you do for us!!!! :)
:happy065:

[Dodger67]

Barb
What FB privacy settings do I need to change to prevent anything from the group page ever showing up on my own FB page?
If that isn't possible then I can not join the group.

[LisaJoy]

Barb -- I'm okay with us having a Facebook page; I agree that it is a good way to reach out. I think your suggestions about how to protect privacy are good ones. I became a "fan" of the facebook page, then I just deleted that post on my page when the privacy issue came up. If I want to check out the action on the fb page, I can just navigate there. My only concern is that people might not pick up on the fact that the main action is here and not on fb -- they might think they're being ignored.

I found out about the fb page from the "admin" email that you sent to everyone saying "happy spring." So I guess anyone who has their settings set to NOT receive admin emails would not have heard about the fb page.

[Barb]

Dodger-this link is helpful for your settings http://www.allfacebook.com/2010/01/facebook-recent-activity/

as well as whenever something would come up from the page you can 'hide" it and it should give you the option at that point to hide everything from that page. Similar to how you can hide all your friends Farmville posts and such.

I wish I was more of an expert on FB settings so if anyone has a better answer PLEASE share.

But Dodger I don't think there is anything wrong with just not joining the FB page. You are so active here and that is the main point.

Lisa-I totally agree and that is why I would only post threads that are conversation starters that get people headed over here. I think we saw that this week with the big jump in new members and conversations.

PS--in the interest of discloser the site has a twitter account as well. Don't think it has ever been used though :)

[sean]

It's a worry.
New word added to the McQuarrie Dictionary this year....'unfriend'.
It's a face book term.
Feels dreadful, you don't just let go of people you don't like or get along with, you actively unfriend them....ouch!

[bcain]

Face book needs to add the "unlike" as a feature. You can choose like, or comment. You can unlike, after you clicked Like, but it doesn't show it as "unliked". I'd be curious if when you unfriend someone, does it show up? If it does, then there should be an "unlike" selection for postings as well. Unfriend is harsh, but I bet it doesn't show up. I'm thinking it's a way of just reversing a friend request that was accepted by mistake.

[valerie]

yeah that would be great, dont want people looking at what i write on here as i think you can open up and really chat in this site and know that its private is great....

[elisaacd]

Well, I for one am a huge FB fan and everyone knows what is happening in my life already so I went to find it but couldn't. Could I have the link please or the name of which it is under? Thanks

[eng188]

Face book needs to add the "unlike" as a feature. You can choose like, or comment. You can unlike, after you clicked Like, but it doesn't show it as "unliked". I'd be curious if when you unfriend someone, does it show up? If it does, then there should be an "unlike" selection for postings as well. Unfriend is harsh, but I bet it doesn't show up. I'm thinking it's a way of just reversing a friend request that was accepted by mistake.

Unfriends do not show up, either in FB or Twitter, which I now use (unless you've been outright blocked, which has happened to me).

[Ziggy]

fyi hiding things on fb only hides them from YOU, not your friends. you have to use "remove" on your wall/profile page to keep others from seeing it. There's also a way to group friends so they can see some activity but not all.

[LysetteOlmeda]

I totally love the facebook page! The only ppl on my facebook are friends and family that already know my daughter has spina bifida. So I dont really care what they see. I think if you dont want your private info out there then dont join or become a fan. Your already a valued member on this site :) Thats what important! Heres to hoping we dont delete the page, I think its great!

[Lifeisgood]

Well, I for one am a huge FB fan and everyone knows what is happening in my life already so I went to find it but couldn't. Could I have the link please or the name of which it is under? Thanks

Elisaacd, you can just type in "Spina Bifida Connection" in the search bar and it should come up. (Note, when you type that in, make sure you use capital letters to begin each of the words and that is us. There is also a "Spina Bifida connection that is not associated with us, as far as I know). Enjoy!

[Beans]

I definitely agree. In fact, I am considering defriending a real life friend....just on FB ...because she is comfortable providing wwwaaayyy too much medical info in her wall posts and inevitably my other friends and coworkers see it. It makesme uncomfortable that it leaves people wondering about me and things I don't share except with the people closest to me...
Sabina/Bea

[Barb]

Elisaacd, you can just type in "Spina Bifida Connection" in the search bar and it should come up. (Note, when you type that in, make sure you use capital letters to begin each of the words and that is us. There is also a "Spina Bifida connection that is not associated with us, as far as I know). Enjoy!
Really? I had no idea there was another group going by this name. I will have to check it out.

Here is our link: http://www.facebook.com/#!/spinabifidaconnection?ref=ts

[georgie]

I still dont know how to get involved in these conversations I have tried to write things twice but i dont think anyone has read what i have written so i will have bucklys of finding or writing on face book

[LisaJoy]

Georgie -- you won't miss anything if you just read this forum regularly.