Hello Rebe and all the wonderful members who responded to Rebe’s question.
Earlier this year, based on the medical knowledge and the political climate of the time, Ben’s Friends made a decision not to entertain discussions about Covid-19 or vaccines on its network of communities. We felt that any such discussion, given the lack of empirical, evidence-based information at the time would quickly and inevitably lead to rancorous discussion filled with blaming, shaming and fear-mongering. That would be far from the “safe and supportive” atmosphere that your moderators here work very hard at maintaining.
At the time, the Executive Directors posted this:
New members arrive at Ben’s Friends with lots of questions as well as having a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines.
The advice we give here is friend-to-friend. It’s not evidence-based medical advice, even if many of us see ourselves as local experts in our own conditions. Opinions and advice about Covid vaccines is waaaay outside our area of expertise!
When we have questions about vaccines (and trust us, we all do!) we depend on the expert scientists and doctors who have dedicated their careers to the study of their specialty. Then we turn to the doctors who know us best. That’s what we advise you to do.
Look to Drs. Tony Fauci, Supriya Sharma, and Jenny Harries and their learned public health colleagues around the globe for the big picture. Then turn to the doctors closer to home who know you well, for the best personal advice that you can get. Because it IS the best.
Yes, we all have opinions, and gut feelings too, but it would be unfair to suggest that your decision be influenced by our (or anyone else’s) gut feeling, hunch or rumour.
So keep an eye on what the experts say, and when it comes time to decide what to do, ask your doctor. When it comes to a Covid question related to your rare condition, run it by your specialist. When I did, here was her answer: “I’d rather you take your chances with the vaccine than with the disease.”
And I’m going with that. Asking for opinions in a group of lay people is only going to confuse matters, and goodness knows the world is confusing enough as it is. Ask the docs.
Since that “Head Office” decision was taken, the world of medicine has made progress, and things are definitely different than they were. It has been wonderful to watch this discussion develop into something not only constructive but informative. And all in a tone that is warm, respectful and supportive. Special thanks to those who posted the very interesting journal article!
Still, it was our decision not to “go there” on our communities. The time has probably come to review that decision, which we will do. Pending that, I’ve decided to close this discussion until moderators, moderator support and administration have had a chance to put their heads together and review our decision. We will post the results of our conversation here, and everyone on this thread will receive notification.
Wishing you all good health!
Seenie, co Executive Director