I’m opposed to lumping Long COVID in with other post-viral conditions. It’s not because I think Long COVID is special on an individual level, or that people with Long COVID suffer more or more deserving of research and care than people with other conditions. Actually, in some cases, it’s the opposite - I think people with other post-viral issues are probably sicker than the average person with Long COVID.
My advocacy has never really been about myself or about other people who are currently sick. My primary concern has always been about the systemic risk Long COVID represents to society as an ongoing process. Go back and read my first post on this on my substack in 2023. This is why I continue to work on this even though I have mostly recovered.
A lot of advocacy understandably centers the needs of people who are already sick. I think that work is necessary. But developing Long COVID fueled my advocacy only in the sense that it motivated me to dig into this stuff and learn about what was going on, and the risks that we were bearing as a society while our leaders lied about it and tried to cover it up.
If I have selfish motivations, it’s that I care about living in a world that functions. When I see excess deaths remaining elevated, cancer rates increasing, student test scores dropping, alcohol sales plummeting, rising fascism, rising disability, governments pushing MAID, etc. I am concerned.
Anytime anyone writes about Long COVID as latest incarnation in a long lineage of post-viral illnesses, they are implicitly assuming something that I fundamentally disagree with: That the crisis is over, that the worst of the pandemic has passed, and the period we’re living in is something like the 1920s following the 1918 flu.
I think this framing is dangerously wrong. I think we’re still in the pandemic; we’re still in the middle of the crisis. Perhaps the absolute worst has passed, but the situation today isn’t actually that much different than it was 4 years ago. And in fact, we might not be passed the worst of it - one bad mutation and we’re back to 2021.
I admit I could be totally wrong about all of this, but there’s no evidence that people can get COVID 8, 9, 10 times and be perfectly fine. In fact, the evidence we do have suggests the opposite. This is a novel virus, and we barely even understand the mechanisms that drive Long COVID. People like Michael Mina go to the NYT and declare that the babies of today will catch COVID dozens of times over the course of their lives and be fine - How does he know that? He doesn’t. He’s asserting it on blind faith, no different than a dangerous religious fundamentalist.
What if we discover that COVID induces something like post-polio syndrome in a large number of people in 15 or 20 years and a bunch of folks drop dead? We just don’t know.
For as long as it has existed, society has been able to deal with a certain amount of post-viral disability. Who knows what technology will bring but there will probably always be infections, and therefore, there will probably always be post-infectious illnesses. To think otherwise is utopian.
All of the people suffering from them deserve care. These illnesses deserve real biomedical research. There is value in having a political coalition to push for these things. But any research that comes will be slow (we’re coming up on year 7 and we have absolutely nothing), solutions that do come will roll out over years or decades. Many people sick today will probably die before a treatment for their condition is discovered. That is just reality.
Last year my wife had 2 strokes and is now disabled. She might improve a bit more over time, but she’s probably going to have major limitations for the rest of her life. It’s a tragedy for our family. It completely destroys the life we hoped to build. But our personal tragedy isn’t a systemic risk - society can absorb a few thousand strokes in young people every year and keep going. But if 1% of 37-year olds started having strokes? That would jeopardize civilization itself.
That’s where I’m at with Long COVID - where I’ve always been. I don’t think it’s a small problem a few unlucky sick people to deal with. I think it’s a big problem that threatens basically everything.