Let us know what our upcoming FMA UK Facebook group should do for people

[desquinn]

As part of preparing for international awareness day on May 12th, we are looking for feedback about a new Facebook group that we will launch.

If you could fill in this form and share with others it would be appreciated.

>>>>> forms.office.com/r/x14agbJT1S

We will still be here on HU of course.

[Hidden]

done

[Midori]

Do we really need one? I have friends with Fibro who wouldn't join a FB group, or HU either.

Don't know the reasons why though.

[desquinn Partner Volunteer FMAUK Trustee in reply to Midori]

We need to be where our audience and community is and there are quite a few facebook support groups with thousands of members. We also have 25K facebook lkes for our page and a reach that is double that.

So it is more of a question of what have we not created one before now,

[Midori in reply to desquinn]

OK, I can respect that, but I remember the Andover FM group had a FB group years back, which is no longer current, also there is the Troll problem as always.

[desquinn Partner Volunteer FMAUK Trustee in reply to Midori]

I think we are looking at a much larger reach than local support groups but some of these have lots of members themselves. We are also conducting the survey to find out what people want and do not wat and recruit moderators to help.

We want it to be well run, safe, informative and a place for support. It will also allow us to recruit more volunteers as we need that to move forward as a charity. I am already pleasantly surprised by some of the people that have put themselves forward.

One of the reasons for not doing it before now is that I wanted to be confident that we had enough people to help with moderating it and I am more confident of that now.

[Midori in reply to desquinn]

That's good then; I understand about wanting it to be safe; I've moderated and Adminned Forums before, but I won't put myself forward here as I'm old and can only get on irregularly.

Cheers, Midori

[rosewine]

Done

[Crossstitch1]

I will certainly fill in the form...and join the fb group when it launches..though glad you will still remain on here ...I have left the fibromyalgia FB groups that I've joined over the years as the difference is immense...people feel they can be openly spiteful on FB where I notice a more respectful tone on hu....sadly I feel you will have your work cut out for you.

[Debbiedo49]

Does it have to be on Facebook? Is it anywhere else? Thanks 👍🏻

[desquinn Partner Volunteer FMAUK Trustee in reply to Debbiedo49]

It would be hard not to have a Facebook group except on Facebook. But as to having it elsewhere we will still have here. There are active conversations on our page so it makes sense to have a group to allow some to support each other and allow for sub groups like Males, benefits and young people which is something we cannot do here.

[Debbiedo49]

I'm not on fb

[desquinn Partner Volunteer FMAUK Trustee in reply to Debbiedo49]

so we will continue to support people on here but there are some on FB that do not ocme on here so we are going where the audience is.

[desquinn Partner Volunteer FMAUK Trustee]

Will just add a little update here. the group facebook.com/groups/fibroac... is going well and approaching 2 thousand members which is amazing in the timescale. Will be looking to livestream some video chats to it quite soon. When we have events we will try and post a note about them on here.

thanks to everyone that filled in the survey.

[Paige1999]

Hi I have been on duplicating for a month. It has helped with my sleep but not pain. Doctor has upped my dose so I'm hoping for some relief.

[Entela15]

How come that we can fly to the moon but not be able to cure a disease!

[desquinn Partner Volunteer FMAUK Trustee]

Physics and chemistry is easier than biology?

One neuroscientist was saying that we know quite a bit about how the brain works in relation to sight and sound. But with pain we are just beginning to learn how things work and very much in our infancy.

[Makie-Uppie]

I thought I should let you know I had a look at the Fibromyalgia acronyms list and honestly I could not think of anything that was of any real relevance or that was important enough to add(to it/the list). TTFN 😀

I has taken me a month to remember to look at it and a month to get round to mentioning it, give or take a month.

[desquinn Partner Volunteer FMAUK Trustee in reply to Makie-Uppie]

The gloassary has had an update thanks to a volunteer on here but the updates have still to be published as awareness week and other things got in the way. Will get it updated soon,

[Makie-Uppie]

Take me a few months to catch up to that too.

[desquinn Partner Volunteer FMAUK Trustee in reply to Makie-Uppie]

I nearly went for the "comical" comment of looking for your feedback in a couple of months

[Makie-Uppie in reply to desquinn]

You should have, a laugh is worth a thousand words or some quite like that.

[desquinn Partner Volunteer FMAUK Trustee in reply to Makie-Uppie]

I do try a lot of the time but it does not always land. Humour is a very important tool. IRL I am known for going for a laugh even when it may not be the most appropriate timing