Where is everyone?

[casinogal]

Does anyone use this site anymore to post? I see postings for one and two years ago, but nothing recent.

[Jo-Goode Administrator]

Hello,

Most people moved to facebook several years ago, which is why I was asked to start a Myositis group on facebook (3 years ago in April). This group is for people who don't want to use facebook, but as you can see is not often used.

I'm admin for Myositis Forum UK, which is a UK and Ireland only facebook group which is very active, approaching 1000 members. It's a "closed" group, which means only people within the group can see the posts and comments, unlike this group which anyone can view online.

facebook.com/groups/2432609...

Regards,

Jo

[casinogal in reply to Jo-Goode]

Thanks Jo. Your facebook group sounds good. I always worry about privacy issues, but that's just me. My friends use it.

[Jo-Goode Administrator in reply to casinogal]

You can set up an account with minimal information and strict privacy settings, so personally I think it's far more private then using a site such as this, where even this post could come up within a Google search, this does not happen on a closed facebook group.

[Tony-Burton]

I used the old site as you could filter to IBM related items only, on this site you have to troll through other Myositis problems not related to IBM before you get articles relating to IBM.

[Jo-Goode Administrator in reply to Tony-Burton]

Tony, you can view IBM posts only (left hand side) as long as the person has speciified the type of Myositis when they posted it.

[Hidden]

I was pleased when this site first started but don’t use it very often as it’s so confusing and difficult to use, there is an obvious ‘push’ for everyone to use Facebook and we are always directed to it when we write posts like this. More people would use this site if it was easier. Myositis UK does not do a good job for those of us with Myositis. I use TMA Myositis, lots of up to date information, help and support with a great patient support forum. We should be doing better in the UK,

[casinogal]

I use TMA, as well. It's very active. Have also attended their conferences. I do like to say hello to my friends in the U.K. as well. Hi David! Hi Steph! Hope you're both well. I'm still in the fight! Best to you all, Bonnie