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