Facebook group

Specific Illnesses & Conditions VM/MAV
1

Howdy peoples

Vestibular Migraine Professional over on Facebook is a lovely new facebook group born out of a need for a migraine associated vertigo fb group that wasn’t full of bonkers conversations and what not.

If you search for it, you might recognise a few names and meet some smiling faces :slight_smile:

Lou x

2

Thanks! I’m going to look for this…

3

I’m in it - thanks Scott !
And you are right - I had to leave another Facebook MV group because the peeps were CRAZY

4

Thanks Lou.

I thought it was time FB had a group where people can go to find out how to get well and not be bogged down by lunatics, whack jobs, quackery and the usual junk information that pollutes the internet.

I called it “Vestibular Migraine Professional” to distinguish it from the non-science and evidence-based groups. And so the title reflects what the content will be.

https://www.facebook.com/groups/vmpro/

It’s interesting how the FB format differs from a forum like this. I can’t put my finger on it but it seems like there is a need for both.

S :smiley:

5

Thanks Scott, thanks Lou … I joined this morning :slight_smile:

Annie

6

Thanks Lou and Scott joined yesterday how nice not to have the usual load of nutters that you get on FB.

Jackie xx

7

Scott - thanks for signing me up & thanks to Lizzie & Lou for helping to set up the FB page. It’s really taken off already & am sure will be a fantastic help to so many people who haven’t yet found our MAV forum. It’s going to be hard to keep up with both sites - however, I can see that it could easily attract members you don’t need & more work!
Barb

8

Just joined now too-thanks!

9

And we’re already dealing with a shark on day two. LOL. Victoria sliced her up like a Christmas turkey. Perhaps we should invite her over here for another round.

10

…

11

Thanks for starting it! I just sent a request. I love the fb group most of the time, but the non science stuff gets frustrating. I try to post links to scientific articles or question them whenever I see someone going off track or talking about wacky stuff. Overall the people on there are really nice and supportive, so I love it for that. I like being able to lift someone up who is having a bad day and that forum is more for that. I love the idea of being able to limit the quackery. I noticed, Scott, that every time you would try on the other group you would get attacked.

Thanks for getting another type of group going…looking forward to it!

Jen

12

Thanks Jen – and ultimately I was banned from it last week. Another reason for starting the new one. :slight_smile:

13

I saw that Scott on the “other” face book page. It was all so silly. All you do is try to help and they don’t give you the credit you deserve. You have helped a lot of people. I do not normally say much on those pages but I am always reading the posts. Thank you for forming your own page-along with LOU and Lizzie. I also joined yesterday.

Teri.

14

Just requested to join. Looking forward to it. The first FB group is kind but I like the idea of a more fact driven/medical driven group also. thx

15

Hey Scott, Haven’t really been on in awhile, but I’m an oldie to this yucky MAV!!! Anyway, so excited for the new FB group, and just put my request in to join!! I hope you are doing well!!! :mrgreen:

16

— Begin quote from “teddypan”

Just requested to join. Looking forward to it. The first FB group is kind but I like the idea of a more fact driven/medical driven group also. thx

— End quote

I just find that if the ground rules aren’t laid down about this, groups and forums end up being invaded by quacks and loons and people who are hooked on anecdotal stories (they don’t understand that anecdote is not evidence) … everyone gets bogged down in alternative medicine which we know is just a waste of time. Worse people take it personally when you tell them something like acupuncture doesn’t work (placebo) and there is this idea that “all sides” are equally valid.

17

Thanks, Scott. Looks cool. I hope it won’t diminish the number of discussions on this forum, however. I do use FB but try to avoid posting there about my health problems. Otherwise I would join. I guess there’s no way to join the group and be able to read the posts without having my membership visible to all my FB friends?

18

Hi Nancy, the group is closed so others won’t see it apart from those in the group. Does that help?

I think there is room for both. Mvertigo is more like a trip to the Smithsonian or National Library whereas FB might be more like a local cafe. :slight_smile:

19

Hi Scott. Yes, thanks! What I’m wondering (not being very familiar with FB’s idiosyncrasies) is whether my friends would be able to see that I’m IN the group, even if they can’t see the posts?

20

I know it’s a pain, Nancy, but you can always create a second facebook account without using your full name. That should help protect your privacy.