Has anyone had experience of setting up or going to a ME/CFS support group?

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Not much support in my area, so thinking of trying to get a group off the ground somehow...any ideas on where to start, what's involved and the kind of things people would want or expect from a group? question k

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  • Posted

    I joined a group when I was first diagnosed 22 years ago. I only went once as the people in the group just moaned about their condition. I think it would have been better if they had speakers or some sort of construction. It is O.K. to maybe discuss your conditiion for a bit but not for 2 hours.

    I felt very deflated when I came away, so never went back.

    Alison

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  • Posted

    I think the easiest thing to do would be to create a Facebook group for events, etc., if you plan to organize some. In any case, you'll probably need to create a web page. People would be interested in meeting each other, discussing treatments, diet, sharing information on good doctors, etc. And a lot of people would of course be wondering whether they have CFS or not.
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  • Posted

    Thanks so much for taking the time to reply. I'm at the fact finding stage so everything helps! Think I might keep it really informal to start, or I'll find myself too stressed which will only make matters worse! cheesygrin JK

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  • Posted

    Sorry I was so negative with my first reply. It must just have been the group I went to. I would not have the energy to go to one now.

    Regards Alison

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