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Wed, Jul 10 5:16am · Established Policies and Protocol in Give & Get Advice

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.

Wed, Jul 10 3:55am · Established Policies and Protocol in Give & Get Advice

I am so sorry. Well, I did it twice today. I sent my reply this afternoon. The page was “thinking” and never processed. My reply was not going through. After a few hours I “refreshed" and my reply was gone.
On my second attempt, I mentioned that my husband always tells me to write everything down in Word first and then copy it. Well, I tried again a second time and the page locked up again. My husband has always told me to write everything down in Word for these purposes. I am learning to follow that rule. I shall try this again and then give you a reply with our biggest issues.
Thank you.

Wed, Jul 10 3:55am · Established Policies and Protocol in Give & Get Advice

I attempted 3 times to reply and I need to refresh each time.

Sat, Jul 6 6:59am · Established Policies and Protocol in Give & Get Advice

Hi. Does anyone have problems in social media groups that complain about Policies and Protocol, that they member will just not follow which turns into a repercussion.

Sat, Jul 6 6:37am · Share Button on Public and Closed Groups in Share

It is a violation for our member's to share a post. People outside our group will take the resource and add it to their group. I don't understand why Closed groups can have the share button removed, but a public group cannot. Does anyone have any problems with that?

Sat, Jul 6 6:28am · Handling Negative Comments - Beyond Your Page in Give & Get Advice

We have a very difficult problem with our Member Policies because members are told they must read type Agree and comply. We give out a Kindly Reminder about our rule being violated and the member will say" I didn't know I couldn't do that". We finally decided that they are informed and have access to the Member Policies, yet they just type Agree but do not read the Policies. We decided whether they typed agree or not, they still will have repercussions. Some of the members can be very obnoxious and say they will not be in the group any longer and say very nasty things.
One thing my husband (who is an Admin) figured out how to BLOCK the individual (even if they left before we blocked them. That has really helped.

Sat, Jul 6 6:17am · Handling Negative Comments - Beyond Your Page in Give & Get Advice

My challenging problem is that I will create all kinds of resources and up to date info anything that will help get our members help. Within 1 minute of posting the Post is shared by 2 unknown individuals who have set privacy on their accounts. So for late nights, the next day I can post all of these new resources and within a minute the Post is shared.
We do want to bring awareness. However, we are the largest public group and we have found that another SPS group will take our photos, videos, awareness pictures on their public "all about SPS" and half of the materials came from our group. Then the last issue is that one of these other groups put a copyright to anything on their public website.

Sat, Jul 6 6:06am · Handling Negative Comments - Beyond Your Page in Give & Get Advice

Good morning. I belong to a Facebook Support Group for Stiff Person Syndrome. I have created and modified as needed MEMBER POLICIES. In our Public Group, I made up a Group Monitor Position – 1st Step before one can apply for an Admin Position. Our Group Monitor will be very attentive to what our members are saying. Because our Group Monitor is learning our Member Policies if someone fails to follow a Policy the group member is given a kind reminder via messenger. Our Policies are very strict. If we need to give a "Kindly Reminder" and that person starts to get negative, foul and obnoxious, per our Member Policies we would take screenshots of any communications, when/where/why, etc. As Admins we have the right to block a member without notice. It is hard sometimes because people can be very rude, but I am a calm person and do not care for confrontation weBLOCK the Member Without Notice. I may even block the person from my own personal page.

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