I wrote a new piece about long COVID--the common phenomenon, where people who encounter the SARS-CoV-2 coronavirus experience rolling, relentless symptoms that can last for months, and even years.
When I first reported on long COVID last June, few scientists or medics knew about it. I described it to one disease expert who said, “That’s unusual.” But it wasn’t—even then. Things are better now.
There's more recognition, coverage, studies, etc. But many long-haulers (and allied researchers) are frustrated about ongoing dismissal; about flawed studies & inefficient research that ignores their needs & expertise; about academics who are rediscovering things they already knew. Academia is slow; their needs are urgent. Long-haulers defined, described, & drew attention to long COVID—
all while sick. They know it better than anyone. But many now feel excluded from their own narrative. The message seems to be:
Thanks for everything; academia can take it from here. Many folks are also treating long-covid as a totally new thing, ignoring the huge overlaps with ME/CFS & other complex, chronic, marginalized illnesses. That’s slowing the pace of research, and shepherding long-haulers into dangerous treatments.
Long-haulers don’t have time for science to do its incremental stumble, for dogma about disease to gradually shift, for academia’s gatekeeping mechanisms to slowly buckle. They need a transformative, patient-centered approach to research, now. They also need social support; help with disability benefits; and for long COVID to be part of policy discussions about how to respond to the pandemic. Our mindset is still stuck between health and hospitalizations, ignoring the hinterland of disability in between.
In this piece, I look at some of what we know about long COVID, why negative tests don’t invalidate patient’s experiences, what breakthrough cases tell us, and what an endemic future means. And most importantly, I look at what long-haulers need and want.
I truly hope it helps. Of all the reporting I’ve done on the pandemic, the three long COVID pieces are the most meaningful and impactful to me.
- E
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