Open Or Closed Groups

[PaulX]

Hi All,

There seems to be a bit of a thing going onon Facebook regarding open and closed groups. I know the MS Trust group seems to be suffering an exodus due to it being open and comments can be seen by everyone.

This seems to be upsetting peoples family members who are too sensitive to deal with the reality of MS. Poor lambs.

 

My initial reaction would be tough t*tt*e, but actually thinking about it, my wife has mentioned that she has seen my comments, so I guess those lucky enough to have been befriended by me will have as well.

It got me thinking, not one of my so call friends have ever mentioned MS to me, so to honest it is s*d all (being polite here) to do with them.

As an aside, these so called friends are being moved towards the door, ready to be pushed out. And unlike Stumbler, there is no parachute to rescue them.

 

FB is good for getting to more people then a forum ever could, there is potentially a price to pay.

I think it is time to say good bye to the Trusts open group and also the Society's open page.

Luckily the Society has a local group for my area, which is actually very good. The Trust needs to reflect on this as well.

 

I think the point I am meandering too, is that whereas it would be good for the world to be aware of MS and how rubbish it can be, the fine detail and discussion is best carried out between those that really understand.

 

Having said that, how closed is a closed group? It is not like you have to show proof of diagnosis to get in.

 

I think it is time to assess where I have an online presence and perhaps trim a few back.

The fact that this mini rant has been conducted here means this is my home base, everywhere else is just icing on the cake.

 

I hope you are all well.

I have been very erratic with my presence, but I do have MS don't you know.

 

Paul

[Marina]

Ah, Paul, you've hit my sore spot as FB tends to be a pet hate of mine. I'm on FB but I rarely use it. I also manage an FB "Page", which is different but an equal waste of time because of FB's algorithms and what it does or doesn't show people in their timelines.

 

There is so much I could say but won't or I'll go on for pages and pages.

 

When it comes to discussions, I way prefer forums. I can't offhand think of all the reasons, but here are a couple:

- Anonymity. Nobody has to register with their real name.

- Layout. Far easier to read by category with topic titles than trying to scroll down a long list of "comments" forever.

- Search. Far easier, full stop.

- Topics are easier to read than those narrow comment boxes with tiny font, where you now have to click to see further replies.

- Ability to "follow" (subscribe to, be notified of) topics, which in turn bookmarks them for you for future reference.

 

I'm also on a couple of FB groups but, to be honest, I can't follow them at all, it's too much of a pain in the proverbial to me.

 

Unfortunately, FB (and Twitter to a point) is killing forums, probably for the simple reason that many FB users stay permanently logged into FB. Yes, they could use the forum's own FB login feature, but it's not as easy for them as going to a group on their own FB. They like FB because it's at hand for them. They can quickly post with one liners instead of partaking in a full proper discussion. FB is making people lazy. To these internet users, FB is the internet.

 

Even though this is unrelated to FB Groups, I came across this interesting, albeit long, article today about the FB "Like" system. I've known for ages that you don't see everything everybody posts in your timeline, and how FB's algorithm works, but this goes to prove how it all boils down to money and has nothing to do with "friends":

http://www.wired.com/2014/08/i-liked-everything-i-saw-on-facebook-for-two-days-heres-what-it-did-to-me/all/1

 

Ultimately, FB is there to make money out of its users. Unlike this and most forums.

 

Thank you, Paul, for being one of our members who stays with us rather than desert us for FB (no matter how "erractic" your presence may or may not be).

[Mal]

I think the problem with the open ms groups is , some of the

threads are very sensitive and personnel .....yeah its ok to talk

to other MSers about these things because they understand , but you don't want family members

and people that you haven't seen for years seeing this

 

i left the main FB group just after xmas after trying with others ,to persuade the admin

to make it a closed group , but they just wouldn't listen , it it was getting full of spam anyhow !

[Scully]

Oh what a can or worms this could be huh?

 

I used to be on FB. I wasn't on there for long I have to admit. The reason. I have to admit to not liking the idea of 'friends' reading through my personal stuff. In fact, I don't feel I like the idea of any personal or private information 'being out there'.

 

I closed my FB account with a simple final message that read . "apologies, but you didn't make the cut" and closed my account.

 

Of course I realise that even here, information is lurking around the Internet and cyber space, and probably being vetted by 'Uncle Sam' and his merry band. A quick google check will reveal a lot of my posts, but only if one knows my nickname, should they know who I am, then they'd have to join a site just to check I guess.

 

Whatever the pros and cons of either open social media, or closed forums. I like to control who I share information with, not have a social media site deciding who sees what, a bit like the tail wagging the dog perhaps ?

 

Scully

Edited 17 Aug 2014, 3:54 pm by Scully

[Nick]

I've never been on FB and don't intend to start now, despite being often badgered by an elderly friend who loves the thing!

I like this forum as it is well moderated and in the main people here are doing what the thing was built for and that seems to me a combination of providing information for people who are in the dark, by those with the knowledge and of course providing a wider platform of support for each other. Anyway in my book it works and we should all be very thankful to everyone who makes this happen.

The other thing I simply love is that we all come from a huge range of different ages and backgrounds so nobody feels left out.

 

Nick