Carrie 1 started an evidence-based support group after leaving one that expected people to moderate themselves.

Transcript

Well, I was in a support group that wasn’t very evidence-based. And I was kind of shocked at the horrible things people were posting and suggesting, and I kept telling the administrators and the moderators, “Can you guys do something about this? This is not good. And I don’t understand what’s going on.” And they kept saying, “People will auto, what’s the word? Auto moderate themselves, people will figure it out between themselves, we shouldn’t censure.” And I was like, “It’s not censuring. This is literally bad information. Ivermectin is not to be taken when you have COVID. What is going on people? You don’t let Ivermectin in the group.” And so stuff like that really shocked me. And the people were saying, reiki healed them, and I was like, “No, you had a natural recovery, and you happened to be doing reiki, it doesn’t – just because you had a natural recovery, and you were doing reiki, doesn’t mean that they’re, one caused the other.” 

And so the support group for me was really important, because I think people need a safe space and they need a space where – I don’t call it censure, I call it – the group is an evidence-based long COVID support group. If you want to go post about, I don’t know, Ivermectin, please pick another group. There’s lots of them out there that has horrible information in them, you’re more than welcome to join them …

We’ll often write to people privately to say, “We took your comment down, here’s why, here’s some education about what is that appropriate comment or not. And please stay in the group, we’d love to have you, but this is what we expect of our members.” And so, really sort of creating a space where people are safe, in terms of their experience in the group, but also the information.

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