Hello. I am trying this again.
We are the largest and only PUBLIC Stiff Person Syndrome support group. Regarding our Member Policies (MPs), we have had several issues.
Our MPs are clear regarding what is permitted and what is not permitted. We are not permitted to shared fellow member Posts. Regardless, a member or someone from the public will share our post. If it is a member, we can give them a written "Kindly Reminder" (which we keep a record of along with screenshots of the violation; it definitely has helped us). Sometimes our members will apologize, some will deny…then we send them the screenshots and case closed. Last winter we went through a period where it was a daily violation. One of our other Policies is that members are not to "give medical advice'. We have made it clear that "we are all able to share our own experiences, what treatments worked for us, what didn't, etc. We have had problems with members: diagnosing other members, telling fellow members to increase or decrease medication. Members have even told our SPS members to “never take xx medication”. Within the last few months our group is getting better at following our Policies.
This year my goal was to work on resources, educational information about the tests we take for diagnosis of SPS, various Advocacy Organizations, medical providers, etc. Our SPS Family is happy with the information we have provided. The closed groups do not provide this type of information.
When I add a resource, within 1 minute of posting the Post is “shared” by 2+ unknown individuals who have set privacy on his or her accounts. We have reported this to Facebook. We have asked that our “share” feature be removed from our group; just like it is for closed groups. We have encountered a few personal Pages and a closed group that has created a website that is public; however, the group is “closed”. I was told by a specific group member who is also in our group that they plan to be the “definitive place for all SPSrs” to go to. Well, I continue to add resources and within a minute my post is shared. We have viewed these other groups and Personal SPS Pages and have found that each group or page had copied 20+ of our resources. We have turned into a resource library for specific groups or pages. It is not that we do not want to help others, but no one ever asks or mentions anything about it.
I have dedicated so many hours and several nights of Insomnia gathering this information. Our Admin Team is not happy about this. I feel like these individuals are advantage of our group. Another one of our Admins wrote a post about this issue.
I am friends with the main group that is doing this. I do not like confrontation. I guess I just do not know what direction to take with this group. As to the other Personal SPS Page, she sent me a PM wishing me luck on all of the work I have been doing. Then, a few days later she also had 20+ links to added to her Page. I would never take resources from other pages and our groups. I read the written materials and talk to the organizations and enjoy the networking.
Thank you for reading this. If you have any advice, please feel free to share with me.