Viewing 11 posts - 1 through 11 (of 11 total)
  • #184543
    Hello?

    Serious question here. Where is everybody?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184549
    Reply To: Hello?

    Do you mean that there is not a lot of folk on here despite the thousands who have MD?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184550
    Reply To: Hello?

    Well Mike, there used to be quite a few posters on here on a daily basis, chatting and stuff. I just wondered why there are so many posts unanswered for months or years, and virtually nobody on to chat. I take it there is a closed group over on Mr Zuckerberg’s site?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184559
    Reply To: Hello?

    HI Ranald,

    While there is the MDUK Trailblazers for younger people for campaigning over on Facebook. There’s no other MDUK Talkmd forum on facebook. Although there is many very good MD condition specific groups all be it with less privacy or anonymity to post as our Forum username based set up.

    As you say it has been very quiet but we do hope with the potential relaunch of Talkmd forum in 2020 that it will attract back more contributors. I know lots of people read our posts and hopefully now that we have both new and seasoned members popping in it will grow to how the forum once was.

    Please keep posting and chatting, us mods try to pop in as often as we can to answer and support. Forums like this one thrive best with input and benefit from everyone’s personal knowledge and experiences.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #184594
    Reply To: Hello?

    You are quite correct about frequent posting generating more interest, Cat, I have found that to be the case elsewhere. I certainly hope that new members will soon be giving us the benefit of their experiences, and asking any questions they may have.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184637
    Reply To: Hello?

    Serious question here. Where is everybody?

    Good point……. Where is everyone?

    Not sure where I am!

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #184687
    Reply To: Hello?

    I wonder if some analysis is worth doing on why people come to this site, and indeed why they do not.I know a number shy away from such groups as this as they don’t want to talk about their condition. I include my sone in this as well as others I have spoken too. Perhaps, also, the relatively small number of folk with MD compared to other conditions will reduce numbers.
    For me I am happy to chat all day long if I can help.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #184688
    Reply To: Hello?

    How’s it going Mr Fox? long time no see! I have no idea why I have looked in on this site again, except that perhaps that pavement headbutt a couple of weeks ago knocked some sense into me!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184818
    Reply To: Hello?

    I wonder if some analysis is worth doing on why people come to this site, and indeed why they do not.I know a number shy away from such groups as this as they don’t want to talk about their condition. I include my sone in this as well as others I have spoken too. Perhaps, also, the relatively small number of folk with MD compared to other conditions will reduce numbers.
    For me I am happy to chat all day long if I can help.

    Mike

    I wonder whether groups like this end up being single-issue; so people tend to ask questions around changes they’re going through (initial diagnosis, or applying for PIP etc), but once those changes are progressed through, there’s little for them to return to. That’s not necessarily a bad thing, but it might be why the forums are a little sparse outside of the initial introduction or question posts.

    JonoWhitehead JonoWhitehead
    Participant
    Posts: 0
    Joined: 05/09/2019
    #184819
    Reply To: Hello?

    I was perhaps thinking along the lines of loneliness and social isolation. I seem to remember this site as having a more community feel to it. I can’t be the only one who has nobody to talk to!

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #184831
    Reply To: Hello?

    Hello I will be a regular I’m afraid… I was advised by my care team in Nottinghamshire to join this group , and thought it’s not very often the specialist tells you to look on the internet!
    New to all this is changing my life so reading all the previous posts are interesting and I’m sure I will get questions soon 🤷‍♀️

    I would definitely be interested in meeting people when the next meet up takes place, and hope I have my diagnosis by then .

    Take care people, Tracy 😊

    Tracyallcock7
    Participant
    Posts: 0
    Joined: 06/01/2020
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