See this site for reassurance:
http://www.hbns.org/getDocument.cfm?documentID=1562

What surprises me is that other boards are sooo restrictive...I feel I have freedom and some privacy here...that stats aren't being 'gathered' to be used willy-nilly out of context...I appreciate that I can 'cite sites' and express concerns freely. Have these things addressed and just get on with dealing with my own issues and also help others.

That, You, Doc John and the others in the support community are sensitve to my and others' concerns and deal with them in a way that exceeds common-sense and sensitivities...always amazes me...I do NOT feel as if I am being secretly 'counted' for anything here...I think that was an original vision of other entities but because they 'statitized me' I also feel in a way betrayed by those sites.

I KNOW we are being 'watched'..it is by whom and how they use what they read that concerns me. Not only my self, but for those who are more well, OPEN in how they present theirselves...What ever we put on here is, essentially OUT THERE and caution is required no matter how much we want to thro caution to the winds.

On-Line support groups ARE legit...whether docs know it or not...at times medical docs are lazy and don't know or care about such groups....then they RESENT same groups because the participants have had more 'experiences' with such conditions than the docs? WHO won't admit it? DUH?

I truly hope and wish that there could be any vehicle by which docs could tell us where they come from [a'la what THEY hear vs what reports say from US] and US tell them what we HEAR? We truly need to learn better short-cuts or vocabularies for communication! We need to be far more efficient in our ways of 'updating' our docs on what else is going on with us...that all complicates things?

Mind you, I am not frustrated for myself [I've good docs -knock wood quick?] but for others...We should NOT have to suffer egos....systems...processes...whatever! We should be able to learn LEARN how to most expediently convey info in a concise way and get on with what NEEDS to be done...no squirrelling around. Well! Got that out of my system..for whatever good it could do? - Thanks ears! - j