Caution of upper level moderators

Be aware that if your views do not agree with a moderator your thread will be shutdown. It is NOT okay to be frustrated or angry if you are unable to access medical care when you need it due to full hospitals. It is NOT acceptable to feel powerless if folks choose not a avoid a disease regardless of how much you might wish their was a solution for ataxia.

Don’t be fooled by the tag under ‘support’ that reads “Feeling down? Need to rant? This is the place. Let it rip, we are here to listen “. It is NOT a place to list one’s frustrations. You will be shutdown.

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Appreciate the heads up. Mr. highways hit it buddy!

Personally, I don’t feel that intervention after a couple of posts was necessary, but that’s just my opinion…
As far as I know, there has been ‘endless discussion’ re Covid in other Ben’s Friends groups, and ‘upper level moderators’ now nip this in the bud…

Please feel that you can continue to voice an opinion, rant or whatever :slightly_smiling_face: I’ll always listen, I may not be able to offer anything constructive but I will listen :slightly_smiling_face:

It’s unfortunate that we’re made to feel ‘monitored’ …

Whatever… I’m easy-going… appreciate the fact that I am amongst people who identify x

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I’m truly sorry that we’ve offended you with our decision on closing the discussion thread in question. This is an issue that we have, and continue to struggle with. We made a difficult decision some time ago to make covid discussions “out of bounds” on our communities because of their potential for two things:

  1. the prevalence of misinformation that is difficult extremely complicated to counter, and
  2. discussion that inevitably becomes hateful and hurtful.
    When either of these two things happen, we are no longer fulfilling our mission of safe and supportive social and emotional interaction for people with rare diseases.

We’ve seen it many times over the last year: covid conversation starts, gets warmed up, vaccinations are mentioned, and then someone steps in and starts the attack. Every. Single. Time.

We have over forty communities, and covid topics have popped up on almost all of them. We do not immediately shut them down, but when they come to our attention, we do close them. The decision to handle these discussion the way that we do was by the consensus of our community mods. Their conclusion was that vaccination was extratopical and a matter between patients and their providers and has nothing to do with the disease itself, and is therefore out of bounds. The moderators were also concerned about the difficulties of keeping that type of conversation safe and supportive.

To anyone not on the thread in question, the covid discussion that we closed was made into a private thread, and as I pointed out to the participants when I did that, others can be added as they wish: the conversation can continue for as long as they wish.

If you have any questions or other comments, please feel free to click on the modsupport avatar: this will send a message directly to the executive directors. Anytime.

Seenie from ModSupport

We make no secret or apologies that our forums are “monitored” “the upper level moderators” are simply a group of long- time moderators who have volunteered their time to check on the communities daily on a regular basis as in most of our communities the community moderators can’t be around all the time nor are the expected to. Its a diverse group that include folks who in their real lives are Teachers, rehab specialists, counselors, providers, and of course Rare Disease Patients themselves. They are pretty enenly spaced across the world. Australia, Philippines, UK, East Coast, and West Coast

A couple of comments about this amazing team. They never make unilateral decisions other than normal business such as admissions that have been waiting more than 1 hour for admission. When it comes to “moderating” depending on the urgency they either flag others in the team and wait until a majority have been brought into the discussion and a consensus reached. In a serious “need to act now matter” they may quarantine a thread until a 911 call to the Co-executive directors is answered. One or the other or both are on a mobile device that will receive a notification 24-7. We, BTW, deal with 45,000+ posts a month, all of which are read no fewer than 4 times by the “upper level mod team”

Regarding this situation. One of the groups that had a lively discussion of Covid matters was our Moderators group who ultimately decided these discussions were not helpful and made the policy. It wasn’t 1 or 2 folks at all closer to 30. Not all of our community Mods participate because of time/health. I can more than appreciate the OP’s post. But the only direction that could go is Vax Supporter vs. anti Vax. At that point personal experience is out the window and the flame wars begin. We don’t don’t need that nor do our patients who often times are struggling to get through a day. That daily struggle or a bad Dr. appointmet cancertainly can lead to some ranting/venting. World events matter little to someone who is struggling to tie their shoes, whose friends and neighbors think they are consistenly drunk or worse “faking a disease” We cant do a thing about world events and we can’t fix stupid but we can support each other with our experiences and understanding of our disease/condition that only someone who has it can understand.

I don’t know if all are aware that there are 7000 recognized “rare conditions” falling into roughly 500 diseases/conditions. 95% have no specific treatment/cure. It isn’t like Ataxia or any other disease is being singled out. One thing Covid-19 hasn’t done is slowed research anywhere and in fact has folks collaborating that never have before. mRNA research isn’t just vaccines. In the last 4 years 2 genetic variations of Duchenne’s Muscular Dystrophy have mRNA based treatments that are just short of a cure. Not to mention numerous forms of Cancer

Nobody anywhere is being denied treatment for acute or emergent situations. Hospitals and ER’s are for just those situations not chronic care/diagnoses. That is done by ones primary provider team not hospitalists or ER Docs. Hospitals are being overworked. Hospital OR’s are shut down for elective surgeries. Keep in mind 70% plus of surgeries in the USA are not done in Hospital OR’s but rather free standing surgery center’s which are for the most part operating normally.

Seenie offered a solution by letting the discussion, after discussing it with the team, to continue privately and adding others as the group continued. NOT ONE post to the discussion has been made since. Instead we get an attack on a team of volunteers who put in hundreds of hours a month keeping these boards as safe and as supportive as can be. In event I have little patience for attacks on my team.

TJ, Co-Executive Director Ben’s Friends

As a group, I feel I can say we aren’t contentious, other groups may have conversations that get out of control, it’s very rare that anything rocks the boat here…I admit I did specifically ask for intervention several years ago, but it was an unusual situation.
This all started off with 1 post ( now hidden, so how can anyone find ii to add a comment), which had 2 ‘peaceful’ replies (myself and another Mod on this group) …and then this ‘heavyhanded’ approach.

Nobody wants conflict, we all appreciate empathy and support… Above all else we like to feel safe…and able to have a voice. After all, that’s what a support group is all about.

Personally, I don’t need educating re the all round devastating effect Covid has had, I’m aware that Mod Support can step in if Moderators on a group don’t immediately reply to a post, and sometimes this is warranted…

I referred to ‘monitoring’ …this wasn’t an attack on anybody…possibly a poor choice of words, but really I was only making reference to what the original post hinted.