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

Hi Chemar,

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.

Thanks Chemar!

Ballerina, this is not exactly an accurate statement. On one of the occasions you listed names when someone asked the question of "has anyone had luck with st. jude stimulators?" My name was included in that list and I specifically asked you to not include me. I know I have seen my name on your list more than once.

Nanc

ballerina
the only time it is ok to quote another poster is on the actual thread where they have posted and using the quote button...it is not even ok to copy someone's post from one thread to another.

Only members themselves have the authority to post about themselves...no one else is supposed to copy their posts or compile lists about them or anything else like that without their permission, and that permission would have to come from them to us, not just to you.

Those lists you are posting are also somewhat in violation of our guidelines on using posts by members here to conduct "research"

Thanks Chemar for the clarification. I didn't know that posts could not be copied from other threads. That is certainly good for all of us to know because it seems to be done. No more lists.

But it is ok for someone to list me and suggest reading a particular post to learn more about my reaction to a particular treatment??????

I am unclear how using the search button to look up treatment outcomes constitutes "research." Do you mean it is OK to do that but it cannot be shared or posted?

Thanks Chemar!

I would like to know this too because I know I have suggested on a number of occassions that people check out the tDCS thread to read about ballerina's experience (and my own too but ballerina's story was particularly inspiring and is what led me to the treatment). If this is not okay I will not do it again. And if it's not okay with YOU ballerina I also will stop and I'm sorry if I ever overstepped. I always link to the thread though rather than relating the specifics of what you have posted. Just would like to check to make sure I am not doing something which violates anyone's privacy.

Catra,
When I post something on a public forum I expect it to be just that. You certainly have not overstepped any bounds as far as I am concerned. Lots of people have copied threads and named many folks and their reactions to treatments.

I joined NT for the purpose of learning and participation in the lifting of the veil on CRPS. I hope anyone who reads my journey will use it in any way that can be a benefit to them.

I have also mentioned you in my posts because you are absolutely so amazingly inspiring, particularly given your age. If you mind I will stop. Although I did not mention your log in name, I shared your success with Dr. Fugedy and he is so excited he would like to speak with you!

The beauty of NT is that so much information is available to us to improve out conditions, and yes-maybe see remission.

You can search whatever you like for your own information and you can refer anyone to any post by anyone using a link to it (or quoting from it if on the same thread)...but you cannot search other members' information and then present it as a "list" or document or whatever else....as you have seen just here...you did so using Nanc's info incorrectly and without her permission...she and any others have every right to object to that

I hope that clarifies

and do remember, while these forums are publicly viewable, the site is privately owned with guidelines and Terms of Use which every member agrees to abide by when they register here.

Thanks. You have my permission to share anything I have posted on the forums as well. Just wanted to make sure we all understand each other so as to avoid any misunderstandings in the future. I am very grateful for NeuroTalk and all that I have learned here and that others have shared. I haven't always agreed with everyone's opinions, but that is each person's right to believe what they believe and everyone's individual experiences are their own. Whatever treatments or tricks give someone relief from this awful condition, that is a real blessing.

As this was the original post on this thread, I am bumping it back up to get this on topic again.