Quote:
Originally Posted by limpy
Dave, there is already a closed group called Lambert Eaton Myasthenic Syndrome (LEMS) on facebook. There is a lot of information to be gathered there. And a lot of experience from people around the world who have lem, but i admire your endeavor also.
I have learned a lot from a few myasthenic groups, including this one. Good luck.
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I was a member there and got bitched at like a child everything was just way way way off topic at times and you had to weed through 900 things of garbage to even find an answer, then you'd get someone join the group and say o my 3rd step cousin had lambert and they died 5 years ago I need a hug.. it was a sad sad sad group.
Everything you did was moderated and you got messages for nonsense.
I still have some of thise lame messages in my facebook message list ..