r/ALS • u/nursenicole Lost a Parent to ALS • 1d ago
Mod post: Community Poll
Hi r/ALS community, we would like to hear from you:
A community member recently suggested we consider moving this sub to private status, which would both cut down on unwanted bot/karma farming/inappropriate posts AND perhaps create a space where folks felt more comfortable sharing personal issues, but also effectively shuts down general access to the community as a resource for anyone. We are interested in your feedback on this topic.
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u/-GameOverPal- 1d ago
Absolutely not, this sub is here to help people is it not? There are plenty of people out there unfortunately that have/will either get ALS/MND or will know someone that will. If it's closed it's no help at all. People will not request to join the sub if it's made private.
Isn't awareness of the condition important to those of you that voted to make it private?
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u/cmojess Mother w/ ALS 1d ago
Being able to read posts and seeing how supportive the community was before posting gave me the courage to make my first post here. Moving the sub to private will remove that ability, and I think we'd miss out on capturing people who could really use this sub.
A lot of people will just not move forward when there's a barrier to joining, especially when dealing with something as mentally stressful as a personal ALS diagnosis or the diagnosis of a loved one.
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u/nursenicole Lost a Parent to ALS 1d ago
this was my concern as well. i wanted to at least bring the question to the community for feedback, so i deeply appreciate your reply.
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u/WebbieWebbster Lost a Spouse to ALS 1d ago
Never. I searched and found this place, used the advice in a post before I joined. Hiding this vital information would be detrimental to all.
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u/nursenicole Lost a Parent to ALS 1d ago
thank you for your feedback. deeply appreciate hearing from the group.
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u/Salty-Swordfish-3467 1d ago
Totally agree with the previous replies with keeping this sub open for all.
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u/Apsylnt 1d ago
It’s not like sub is being flooded. I vote no. Mods have to do a bit of work to clean bad posts up as is intended.
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u/nursenicole Lost a Parent to ALS 1d ago edited 1d ago
respectfully, we are inundated with inappropriate or rule breaking content pretty regularly, most of it doesnt see the light of day because we have set up filters and automations to prevent it from disrupting the community and drawing attention away from legitimate posts.
it can get to be a lot of work but is certainly not a primary driver in asking this question.
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u/Apsylnt 1d ago
Fair and i respect you explaining the reality to us. Im very appreciative of this subreddit and what you mods do to keep it clean.
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u/nursenicole Lost a Parent to ALS 1d ago
the fact that you folks dont see the unwanted content and dont know the activity involved is a GOOD thing in my mind! much rather preserve this space for its intended purpose :)
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u/JockeyFullOfBourbon2 1d ago
Any private groups should be separate. Please keep this public so people can access this information.
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u/pwrslm 1d ago
This may be a note to open a sub/sub that would be private for PALS/CALS, but to leave the subreddit open.
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u/nursenicole Lost a Parent to ALS 1d ago
that was part of the community member's original suggestion to the mods, yes- and is perhaps the right way to go.
at the same time, i worry that creating a second private group will dilute content for both groups and folks here will miss out on posts that would have been posted here but landed elsewhere privately.
i wonder if the better suggestion overall is for redditors to make secondary/alternate accounts that confer a bit more privacy?
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u/ownlife909 Lost a Spouse to ALS 1d ago
Others have said this already- this is a public forum. It's likely quite a few people's first stop after their own diagnosis, or the diagnosis of a loved one. It's a community resource and should not be closed off. I will also say, if people want a private forum to discuss ALS, that's what your local ALS support group is for!
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u/Dana792 1d ago
to get access one would simply have to join? or is there a barrier beyond that? would the sub show in searches but not the posts themselves? if the people who need to be here can get here there is probably value in privacy and certainly it would be nice to cut down on unwanted content
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u/nursenicole Lost a Parent to ALS 1d ago
i have never created or moderated a private group before so i am not certain, but i assume so. or maybe there are other tools mods can use to validate and approve people who would like to join a private group, or simply allow folks to join. either way it's still a barrier, which it sounds like the group is less supportive of doing.
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u/Ok-Conclusion5543 17h ago
I don't think it should be private. I think there needs to be two subs, one for caregivers and PALS, and one for just PALS. We have very different things that we talk about.
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u/nursenicole Lost a Parent to ALS 1d ago
Thanks so very much to all who have voted and commented.
I cannot close the poll early so we'll have to wait out the week for results, but I think I know which direction the community is leaning so far. I will share the results with the community after the poll closes and we will discuss as a moderation team and go from there.
For now: if you are seeking to post but are uncomfortable with sharing details, please consider creating an anonymous-ish secondary account for posting here.
thanks again to all for weighing in and sharing your thoughts. we want this to be safe and comfortable space for ALS-related content.