UK MS Society and lost, give them a map

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UK MS Society and lost, give them a map

Postby fee001 » Sun Sep 18, 2011 3:44 am

Hi!

i am truely concerned about the "limbolanders" and "young people" left on the MS Society website, the board is not functioning as it was, A lot of people have left the site, and the above vulnerable have been left behind, now I m probably not supposed to do this but if anyone frequents this site and has access to the above, please make them aware of this site, as I expect some of them are feeling a little lost.

I have found that the MS Society dominates in the UK so profoundly that other sites get lost in the process its was by chance that I stubbled over this one.

So please PM a couple over there so word gets round, I cant because, i'm not allowed access, if not I would do it.

Thanx
Fiona
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Re: UK MS Society and lost, give them a map

Postby CureOrBust » Sun Sep 18, 2011 6:33 am

fee001 wrote:I cant because, i'm not allowed access, if not I would do it.
May I ask why you are "not allowed" access? and by who?
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Re: UK MS Society and lost, give them a map

Postby fee001 » Sun Sep 18, 2011 7:39 am

hi!

I cannot go into detail as I 'aint done there yet, legally that is, and that is way off in the future. Basically I'm banned, unjustly I might add.

In a way it worked out good, started my blog, because I couldnt get thrown off of there. and then I found here which is brilliant so all worked out tickety boo.

Fiona




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Re: UK MS Society and lost, give them a map

Postby PaulX » Tue Sep 20, 2011 2:19 pm

There are several good forums about, a quick search with your preferred search engine should soon find them.
I have yet to make my mind up about the Societies forum, both the old and the new and I am sure many people will find a place that suits them.
Or perhaps be a bit promiscuous like me and use them all.

If anyone wants some links then send me a PM and I will be more then happy to share.
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Re: UK MS Society and lost, give them a map

Postby fee001 » Wed Sep 21, 2011 3:11 am

Paul,

Would multi tasking as in different forums as opposed to just sticking religiously to just one, is not a bad idea, widen your options so to speak, plus you may gleen some important info from one and you can spread the word to another and thats a good thing.

I like it here though because of the variety of people from different countries, which makes it an excellent vehicle to transport viable ideas and theories around a greater area and that again is a good thing. It is diverse on here as accomodates all areas involved.

It even has a humour board. its good to seperate issues, as somedays you might not feel like reading a joke, your day might not be funny in any way.

What worries me about those stuck on a certain site, is that they will just stick with what they are used to, as they feel kind of safe. And it might be a good thing for them to visit somewhere else with more alternative ideas and theories.

Else there is a risk of becoming instatutionalised in their thinking and that is NOT good.

I do constantly worry about the young or newly diagnosed that they may get trapped in routine, and that again is not good.
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Re: UK MS Society and lost, give them a map

Postby PaulX » Wed Sep 21, 2011 4:52 am

Agreed.

It is good to flit about a bit and get a wider picture, but the risk is that you remain on the periphery, not getting as involved as perhaps you could.
That will suit many, but no others.
Younger people may well turn to Facebook and the like for their support, which I am sure is just as good and relevant for them. I don't because I don't particularly want to advertise my condition to the world in general and it more difficult to do that on FB. I am still in the world of work and I want to avoid any chance of prejudice, certainly while I would appear to be outwardly fit and well. As long as you don't look too carefully or take me too far.

I like it here because there does seem to be a wide range of people from all over at various stages.
I found the one you mentioned earlier to be populated by those with more progressed conditions, which can be a little scary for the newly diagnosed. It scared the life out of me, that's for sure.

There is a place out there for everyone though, I'm sure of that.
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