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Facebook MG group

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Unread 01-31-2013, 04:05 AM   #1
Tracy9
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Default Facebook MG group

https://www.facebook.com/groups/2216...6902141680012/

This is a Facebook group for those of with or suspected to have MG. If you are on FB, check it out!

(I just posted a link in there to here, too!)
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Unread 01-31-2013, 06:54 AM   #2
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Thanks for info - i found it but not sure wht you do with it other than to see there are 179 members.

I tied to join and said closed group.
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Unread 01-31-2013, 08:40 AM   #3
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Originally Posted by StephC View Post
Thanks for info - i found it but not sure wht you do with it other than to see there are 179 members.

I tied to join and said closed group.
You click "join," and then just wait until your membership is approved. Then you'll be able to see the posts. Thanks, Tracy!

Abby
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Unread 02-01-2013, 12:18 AM   #4
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The people are super nice and supportive. It's not a huge group either which is nice because it keeps it a little more personal. I think the group and this forum are both great. I just spend too much time on them!
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Unread 02-01-2013, 06:48 AM   #5
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All of the Facebook and YouTube "like/dislike" and "approve/disapprove" and "thumbs up/down" makes me nauseated. As if anyone should care. It's only important what you think of yourself.

I'm glad you have a support group, Tracy. Thanks for letting people here know about it.

It's just not my cup of tea.

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Unread 02-01-2013, 06:08 PM   #6
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Ha ha Annie...I'm so used to the "like" button I look for it everywhere, even when it doesn't exist! I'm homebound and mostly bedridden, also live in a very remote and isolated place where I can't even see the road, so the internet is my only link to the outside world besides a doctor's office. I spend a lot of time on FB because of that.

It has a lot of limitations, though. I just need the human connection. Between there and here, someone is always up, too. Someone on the FB group was up when I had to go to the ER on January 7th and she stayed up all night with me, messaging with me and helping me through that scary night when I could not breathe. She is more experienced than I am and gave me good hints, checked in on me, etc.

FB is sort of good for immediate gratification, I think. I love forums because there is so much fantastic info and it's easier to access and doesn't get lost.
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Unread 02-02-2013, 03:00 AM   #7
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I'm sorry you're so isolated, Tracy. That's not fun! I "like" the thanks button here. It gives you one option, to be grateful and thankful for others. Heck, even if I don't click on it every single time, I'm beyond grateful for everyone here.

Do you have a hobby you really like to do? That helps me get through some pretty dreary days.


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Unread 02-02-2013, 03:36 AM   #8
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My time on this forum was wonderful when I most needed support.
Had I thought of it I would have joined FB as well.

I did not like the thank you buttons to start with as they can in some instances leave you feeling´outnumbered´

By the same token, we are all human. I´ve been grateful when someone thanks you for your opinion, symptom description, question, advice. And I have to admit when I came home after a doctors appointment wondering how I would cope without any validation from the doctor about choking, swallowing and breathing symptoms and feeling totally alone then someone pressing that´thank you´ button saved my day Now I am neutral!!!!

Have a great day
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Unread 02-02-2013, 09:00 AM   #9
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I think using the "thanks" button transcends thanks.

One can "thank" even if one does not "agree" with a post.

I sometimes use this feature to show I have read the thread, and/or post for some reason. Some people are very sensitive to being ignored, and the button, shows them at least someone is there in some capacity. When conversation is holding its own, I will only thank, but not join in, sometimes.

I don't thank each and every post however, because I read so many of the forums, I'd end up EVERYWHERE! LOL

The "thank" button had a somewhat rough beginning, with some people years ago a bit unsure about it, but as time has passed, it has been accepted and used often now. When visiting other forums on the net, I miss it's presence there now!

It is a new feature that vBulletin put in on some upgrades we had a few years ago. Like some of the other features here, it is
voluntary. Doc was very generous and understanding about it.
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Unread 02-02-2013, 09:12 AM   #10
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Quote:
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I think using the "thanks" button transcends thanks.

One can "thank" even if one does not "agree" with a post.
Exactly. I use the "thanks" button to show I've read the post. Alot of times folks with chronic illnesses just can't respond immediately....either because of physical pain or mental cognitive issues. I'm very, very appreciative of this feature.
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