Originally Posted by Chemar
CRPSJames and/or ballerina (I am not sure who originated this list)
Please note that it is absolutely NOT OK to make lists and post them here about people's condition or their success or failure with any treatment
That is a complete violation of their privacy! and, as one member has already mentioned, possibly erroneous info!
If members want to post about their own treatment, that is fine, but you cannot make these lists and post them here
I can't speak to a list today since I did not see it or post it. In the past I posted in response to a question on how to locate posts about spinal cord stimulator revisions, spreads and or failures. I did a cursory search, only back several months and only mentioned those who posted their responses in those exact categories. I did not think that someone's post on a public forum about their response to a treatment was private information, only that which was sent in a private message.
I only used the descriptions of the posters themselves with the reader being able to decide for themselves after reading someone's story that the risk of spread, etc. is worth it to them.
I know many posters have listed my posted comments regarding my own reaction to treatments in addition to listing my name to look up exactly what I experienced, including treatments that have had side effects. I was not asked permission first.
It would probably be helpful for all of us to know how to post and share this kind of information in a manner that encourages open discussion and self advocacy.