Medicine is alarmingly unscientific sometimes. For a whole host of reasons, including privacy, politics, and arrogance, there is no systematic tracking of side effects of drugs, or reactions to different infections, or how effective various surgeries are as interventions for particular conditions, or anything at all, really. And nowhere has this been more apparent than in our collective response to long covid.
What is long covid? We have no idea, except that it could be a collection of any of over 50 different symptoms – quite possibly many, many more.
How long will it last? We have no idea, except that we define it officially, as still experiencing symptoms from 12 weeks post infection.
How many people have it? We have no idea, except that some estimates suggest as many as 30% of people with covid will experience long covid to some degree. It could be higher.
The numbers, at least, we could be tracking. In Australia, confirmed covid cases are largely recorded – originally, we had a record of who had tested positive on a pcr test, and now we are supposed to register a positive rat. Sure, lots of people who get positive rats probably don’t register them, and lots of people who have covid probably don’t bother to test.
Still, we have an unprecedentedly large cohort of people we know have had covid. Probably. (Rats and even PCRs can have false positives from time to time.) We could be following up with all of those people, or some representative sample of those people, or really anyone at all to find out how they are tracking with symptoms. But, although there is research into long covid, there doesn’t appear to be any systematic tracking & followup of people who have had covid. So we don’t know much at all.
The thing is, this is still a huge step forward over how much we know about existing post viral syndromes, which have been wreaking havoc among a small section of the population for decades – probably a lot more. Until long covid hit the global consciousness, Post Viral Fatigue, or Chronic Fatigue Syndrome, or Myalgic Encephalitis, or whatever you want to call it, was largely considered a myth. An excuse. Extreme hypochondria. Nothing real. Nothing worth taking seriously.
I had post viral syndrome in my early twenties, and I was gaslit by many in the medical profession, who seemed to think I was just trying to do too much, or a little anxious, and I should really accept the energy levels I had available to me. I spent years struggling with exhaustion, brain fog, aphasia (inability to find the right word), and frequent recurrent infections. I was horribly unwell, my lifestyle wildly compromised, largely unable to work, and told this was just my life now, and nothing to really worry about. I eventually found a supportive immunologist, but there was little he could do aside from acknowledge that I was genuinely unwell. That, in itself, was enormously reassuring, because even my parents, with their medical backgrounds, did not believe I was actually ill.
Eventually I clawed my way back to health. I learned a lot along the way, including the very tough lesson that trying even harder to get well could make me worse. I had to learn to rest, push myself a little, rest some more. Too much pushing could send me backwards, but so could too much rest. Those few times I summoned the strength to get out and socialise, I could appear almost normal while I was out, but it was painfully easy to overdo things, and I’d wind up paying the price for days, if not weeks.
There’s an art of knowing when, never try to guess.
Toast until it smokes and then
twenty seconds less.
Piet Hein, Grooks II
But there was no guidebook. No rules. No clear, evidence based approach to getting better. I was determined, but I was also lucky. Some people never got better. I don’t think I ever got all of my energy back, but I did pretty well. I got fit. I had kids. I had a busy working life.
Enter the pandemic, and the one thing that we do know about long covid, which is that people who have had anything like it before are very likely to have it again, probably worse.
In May, after over two years of extreme caution, I got covid. Last Friday my post covid fatigue officially became long covid (because it’s been more than 12 weeks and I still have symptoms). I have a little aphasia, but not as much as last time. I get brain fog, but this one is different – it feels more like a weird compression headache. I know when my head feels that way I need to stop and rest immediately. It probably means I needed to stop and rest an hour or so earlier, but who knows? I get hot flushes, random pain, dizziness, constant exhaustion, breathlessness. I don’t want this to be my life.
Sometimes I get out and do things. Others I lie on the couch and struggle to summon the energy even to heat up a bowl of soup for lunch. I’m working, but less than usual. My social life is carefully doled out, like strictly rationed treats, and sometimes it’s still too much, but without social contact I won’t cope at all. Meanwhile I’m also trying to repair a hip injury, which requires a consistent approach to exercise that I am simply not capable of right now.
This all sounds dreadful, but I’m a lot better than I was, and I think I’m probably on the road to full recovery. I am better, this time, at not overdoing things (it would be hard to be worse!) and more likely to rest when I need to. That will help. I’ve just had my fourth booster. That will help, too. But it will almost certainly be a rollercoaster, with plenty of frustrating ups and downs. Everyone’s experience of long covid is different. Some people might never get better. Some will wind up with auto-immune diseases like Multiple Sclerosis or Parkinson’s. Covid leaves a footprint, and there’s no knowing who it will crush, and who will barely feel it.
Last time I had post viral syndrome I lamented the fact that I couldn’t use my body as a science lab – tracking everything, monitoring the smallest variations, trying to find correlations between minute changes in, say, nutrient levels, or hormones, and how I felt. I really wanted to understand what was going on with my body, and try to optimise my recovery.
This time, with so many people falling ill, maybe we can finally apply some science to this thing. We are sometimes very arrogant about our understanding of the body and what we can do, but the sad fact is we remain wildly ignorant. Sure, we can chop out mis-aligned hip joints, reposition them, and bolt them back into place facing the right way, but we can’t do anything like that to the immune system. Perhaps it’s time for a little humility, and a lot of science. And trying really hard not to get (or spread!) covid.
* For more on medicine’s lack of scientific rigour, check out Chapter 2 of Raising Heretics: Teaching Kids to Change the World.
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