Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Dear ers, I was on vacation last week and have just read through all the posts. It was so good to hear from you all and just want to say thanks to a few lurkers who are now wanting to be more active. In light of the 'opinions' - 'experiences' issue I am posting the following for clarification and focus. Posting our 'PERSONAL' experience is vital to all at . We are incredibly diverse, in our CMT and many other ways. By saying " This works for me... " or " This is how I manage pain...' we are sharing our experience. When we get into 'opinions' things sometimes start to get messy. Yes, I too have my opinions and try to keep them off our list. In posting " I think rhubarb lotion for pain relief is nonsense... " there's no personal experience behind that. It is a matter of personal opinion. (the example I used is fictious, btw). Now, if I post " I have been using rhubarb lotion for foot pain for X number of months/years and it helps me/or doesn't help me - well, that is sharing personal experience on the subject. That's what we're about here at . 'Opinions' can invade a group like ours and be turned into attacks, flames and rants. Feelings get hurt and other muddy things happen. I hope you all can understand what I mean here. I am saying, please do not share your 'opinions' on . Instead, keep sharing your 'individual personal experiences with CMT'; how you manage your symptoms, and remember we do like to stay as upbeat and positive as possible. began as a place for people with CMT and their families to come and learn from each other about the diversity of symptoms, to ask questions, to share resources, and to follow CMT research. And we're doing great on this. does not give out medical advice, nor is any ONE person 'the expert' here. We all have CMT - we are all experts in our own lives. and all here do offer suggestions from time to time, as we all know. If you find something here than CMT people find helps them, by all means, take the info to your doctor. Your doctor is more than welcome to join too! There is also plenty of CMT information at http://cmtworld.org and also in the magazine, CMT...Today. As soon as I recover from jet lag, I will be back posting and continue to bring you the best research news, as well as a positive and hopeful place to share about your CMT - right here at ! ~ Gretchen/your Moderator Quote Link to comment Share on other sites More sharing options...
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