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April 04, 2019

Facebook groups: the good, the bad and the ugly

by Chris Kelly, Founder of AbScent

The Facebook groups devoted to anosmia and other kinds of smell disorders are, like everywhere else on the internet, places of good and bad. I started looking around in them nearly seven years ago, and my first experience in a large and well-established group was to be shouted down. I had asked if anyone had experience with smell training. 

“I tried that once, don’t bother”. “It’s a scam”. “They just say that to give you false hope”, and my favourite: “doctors just fob you off with steroids and smell training.” 

I’m dismayed to say that even with all that we’ve learned about smell disorders since 2012, there is still much misinformation out there.  I moderate my own AbScent Facebook group of over 1000 members, and I’m careful about content. It should be reliably sourced, and when people make suggestions about interventions, I need to be sure these are proven or at least not harmful.  In other groups, I stay as an observer, mostly just listening.

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