General failings of local MS groups

Well it’s just around the corner now when we can get together and talk about the things you want to talk about whilst also planning for the future.

I think the big message to everyone who is or who are thinking of attending is the fact that EVERYTHING we will do will be strictly informal, relaxed and hopefully interesting! I am looking at the Meetup possibly breaking new ground in doing things totally different to the stuff thats on offer from the local MS groups.

I tell you my biggest issue with those local groups is the fact that NONE of them would even consider telling their members about our Meetup. Surely it should be the choice of members if they wanted to get involved and not to be dictated to about where people go and the things they do!

Which is what they are effectively doing by not telling people we exist. I don’t like to swear but this kind of attitude from the MS groups and staff really does p-ss me off! (Sorry)

Please if you have any thoughts then I want to hear them - this is YOUR Meetup and is a place where we will make you feel you belong [:)]

Look forward to seeing people on the 4th and the more the better for a nice coffee, a bit of something to eat and a good old natter. I’ll be the only bloke there at the moment so plse make sure you take it easy with me.


have read ur posts re meet up…

as i mentioned before,i was involved in starting groups in edinburgh,glasgow and dumfries.

they were (i use past tense cos i’ve handed over to others cos of past 6 months) informal,an opportunity to ask questions re ms tips etc and general chit chat.

the local ms society are aware of these meets-they meet 1st week of month and we aim for 3rd week to give people opportunity to attend both. over the past 5 years they have been running a few of us have got close-phone calls amongst many.

i would point out to u as organiser (just going by previous experiences) expect the unexpected! our group ranges from 3 to 12,this all depends how folk are on the day,depsite any previous good intentions to attend.

i wish u all the best with the group.

ellie x

hi mike

my local branch (bolton) held the christmas meal on monday and it was attended by a lady who organises meet-ups.

both groups seem to rub along nicely. it’s a shame that some don’t.

carole x

ive looked up ms support groups in the bilston/wolverhampton area, there was one round the corner by me, but there is’nt anymore, i cant find a support group in my area at all, looks like that that who ever runs the area decided they don’t need to do support for people with ms


Using the Internet I have done quite a bit of poking around of the assorted MS groups supported by the MS Society and MSNTC. One overall complaint that I have is that the social networking leaves a lot to be desired.

I think there needs to be a website and a Facebook page for each group. Social networking is so important. I’m sure its not beyond the wit of the top societies to build a website that can then be given to all the groups. That will generate consistency and at the same time ensure the FB page is linked to the website.

I have ended up using snail mail or the phone.

There are masses of people who are missing out on the services provided by these groups and at the same time people want to know where the nearest group is. A presence on the internet is a de-facto standard these days someone needs to organise this

Lots of food for though there