Thread by @jenbrea

I had the privilege of talking to someone almost two years ago who was very intimately involved in fighting the pandemic and shaping our entire response to it. I offered to present (or curate people to present) to their organization on post-viral illness and disability.

It seemed important to have more (rather than less) information. And perhaps some of their considerable resources could go into research & prevention. Or at least their influence.

I was rebuffed.

He told me that all their efforts were focused on the vaccine, and once there was a vaccine, it would end the pandemic, and so would be the best way to prevent post-viral illness.

A friend in the UK told me there are triple vaxxed households experiencing Omicron outbreaks.

You don’t even need to have symptoms of COVID to develop #longCOVID. You only need be infected.

I am sure he and his colleagues thought, “we have access to the brightest minds in the world.” I tried to tell him, “Yes, but none of them know anything about *this.*” I know the people who do.

Well, there’s a whole social science literature on power differentials and information asymmetries. It boils down to this: there are diminishing returns from listening to your expert echo chamber.

The “missing piece” is often somewhere “hidden” among those you exclude as “below” you in the hierarchy.

I see this pattern being repeated, e.g., in the RECOVER program.

https://twitter.com/ahandvanish/status/1470898116924694535?s=20

And every time @ahandvanish tweets about her frustration about “patient voice” and “seat at the table” lip service.

I don’t have any answers. At this point, I’m just reflecting on the human condition.

We’ll make movies about this someday and I’m sure they’ll be very poignant.