Fake fatigue in long covid

A curse that works. For me.

This morning I was half-sitting, half-lying on the tiger-striped beanbag, weak and exhausted, mentally and physically.

I was slowly scrolling twitter, but my brain was full of sludge and I couldn’t make sense of any of it. I was gasping for breath; I couldn’t get enough air into my lungs. I thought “I should get up and do something” but that was completely impossible.

It’d been like this for a week. I had no idea why. Although, the night before, I put some pieces together. And then earlier this morning, while we were both waiting for the coffee machine, I explained a theory to my spouse Charlie. They nodded and took their oversize mug off to work.

It’s time for SCIENCE, I thought, finally.

I pried myself out of the beanbag. I was dizzy and lightheaded, and my wobbly legs could barely hold me up. Slowly and carefully I got to the garage and drove to the park.

I ran six miles. Then I came home and wrote this post.

Fuck you, long covid, you are a fucking liar.

Don’t take medical advice from internet randos

23.6% of the internet is “I cured my cancer with orgone pyramid crystals, you can too.” That’s impossible, and obviously you should ignore it.

0.37% of the internet is “after years of unexplained disabling sickness, I finally figured out—no thanks to the healthcare system!—that I had a zinc deficiency, and my body needs five times the usual amount, and now I take a handful of zinc capsules every night and I feel fine!”

“The easiest person to fool is yourself,” in the immortal words of Richard Feynman. So any such account should be regarded skeptically. But presumably defective zinc metabolism is possible, due to unusual genetics or who knows what. Maybe the blogger did figure that out. If you have similar debilitating symptoms, this could be important to check. On the other hand, it’s unlikely that this is the cause for you, even if it was for them. And, taking huge doses of zinc can cause other trouble, so you’d need to be careful.

This post is like that. I’ve figured out a way to deal with long covid fatigue that has worked for me. It might work for you, if you have that. I have no idea. It may also cause other trouble, so you’d need to be careful.

To be clear before getting back into it, long covid is real. It was reasonable to doubt that a couple years ago, but there’s been tons of progress in the science, and there’s no doubt it is an objective condition. Long covid fatigue is also real, and not psychological or malingering or illusory. I’ve had disabling symptoms a lot, including this morning.

Long covid fatigue can also be fake. The SCIENCE I did this morning proved that. Again.

One week ago

One week ago, Charlie and I did a hike: fourteen miles, 2300 feet vertical ascent, topping out at 12,500 feet altitude. That’s more than I’d done in a year.

Charlie at altitude

The air at that altitude is thin. There’s 62% as much oxygen to breathe as at sea level. Your body doesn’t like that. Altitude sickness at 12,500 feet can be fatal in unusually bad cases, and pretty nearly everyone gets some symptoms. Fatigue, physical weakness, dizziness, lightheadedness, confusion, and general malaise are typical minor symptoms; for me those usually kick in around 11,000.

We stopped for lunch at 12,500 after a mile-long steep ascent. “I was pretty pleased to be able to keep up with you!” I told Charlie. “I was really feeling the covid lung damage on the way up. That weird sensation that you can’t get enough air in your lungs because they’re hollow. Probably the virus destroyed a bunch of the alveoli, so there really is a lot of empty space, and not enough surface area to absorb oxygen.”

“Yeah, I know that feeling,” said Charlie.

“I mostly haven’t had it in months,” I said.

One year ago

I got covid. It was bad. There were six days when I didn’t get out of bed except to go to the bathroom and refrigerator. In bed, during the day, I just stared at the wall, because my brain was incapable of scrolling twitter. I vaguely thought “I should go to ‘urgent care’,” but that was too complicated and difficult. Charlie, who would have driven me, was away leading a meditation retreat.

Gradually I got better: day by day, and then week by week, and then month by month.

After a few weeks, the main lingering symptoms were fatigue, brain fog, and a cough, with the hollow lung feeling.

I’m used to disabling fatigue and brain fog. For several years, I’d had an undiagnosable condition that produced both of them, randomly for periods of about a week, and then I’d feel normal again for a week.

“It’s weird,” I told Charlie, a month into long covid. “This fatigue feels quite different, somehow. I can’t articulate it, but it’s got its own dissimilar texture.”

Two months into long covid, I noticed an odd thing. I could push through the fatigue. If I wanted to go for a hike, but felt too tired, I could just do it anyway. It worked for mental fatigue too. Want to write an essay, but brain is full of sludge? Just do it.

It was no fun at all. Every step of the hike, my body would be saying “you are too tired, you can’t do this.” Every word of the essay, my brain would be saying “you are too tired, you can’t do this.” And I’d say “No, fuck you, shut up, I am doing this.” And I would.

That didn’t work for the other kind of fatigue—which I still had, roughly for alternate weeks—at all.

Five months into long covid, when it was nearly gone, I got covid again. I got Paxlovid this time, which knocked it right back. After a week, there was only the cough, which only lasted a month. And when it was over, the long covid was gone too. Completely.

I thought.

Yesterday

Home again the day after our long hike, I was completely wiped out. That seemed natural; it was more than I’d done in a year.

Also the next day.

And the next. Is this supposed to happen?

Six days exhausted.

Something’s wrong.

I noticed that I’d got a surprising amount of writing done, despite mental exhaustion and brain fog, because I had given myself a deadline. Also, I still couldn’t get enough air. This is… familiar?

Today

I haven’t had long covid in half a year, I thought, near-comatose on the tiger-striped beanbag.

I can’t have gotten covid again, can I?

But, thoughts oozing into consciousness like molasses pouring on a cold day: I know what to do with long covid fatigue. I say fuck you, long covid, I’m doing it.

So I ran six miles. And my body kept saying “you are exhausted, you can’t do this,” and I said fuck you, I’m doing it.

And now I feel great.

Mechanism

Some while after discovering that I could push through long covid fatigue, I read “The ‘false fatigue alarm’ theory for Long Covid fatigue” by

Dan Elton

. He suggests a plausible biological mechanism for at least some cases of long covid fatigue, which seemed to explain his experience.

It seems to explain my experience even better. Including what happened at 12,500 feet, and over the past week, and this morning.

I’ll sketch the theory here. If it’s relevant for you, or just intellectually interesting, read his post. Here’s key paragraphs from it:

The central governor theory posits that fatigue is generated by circuitry in the brain that creates a mental model of the body. Using that model, the central governor can estimate how much energy the body has in reserve and how close organs are to being damaged due to biological limits being reached (for instance by lack of oxygen). On the basis of this model, the central governor carefully limits the body’s use of energy so as to leave an emergency reserve of energy and to prevent irreversible muscle or organ damage. All of this happens unconsciously, outside of our direct control.

Crucially, the central governor’s model is learned, based on prior experience, and responds to incoming sensory stimuli. The model also adjusts over time in response to physical training which changes the body’s abilities. Training yourself to run faster involves not only conditioning your body but conditioning your brain as well.

This is also believed to be true of strength training. You are physically able to lift much more weight than you normally “can,” but safety circuits limit you—except in extreme emergencies—to prevent you you from tearing your own muscles. Training partly works by demonstrating to those circuits that heavier weights are safer than they thought.

It’s normal to feel fatigue in response to an infection. This is because [making] antibodies and white blood cells requires a lot of energy. In response, the brain builds up a model that the body has less [baseline] energy. This model is maintained later, after the infection has cleared. It’s quite possible that false fatigue alarms are self-reinforcing — that they maintain themselves via some sort of feedback loop.

So, let’s say that before covid, your “governor” thought you have 100 units of “baseline” energy when rested, and lets you burn 80 of them to keep 20 in reserve, and then makes you feel too tired to go on. During acute covid, 50 units go to fighting the virus, so the governor resets its model to thinking you have 50 when rested, because once you’ve used 30 for anything else your reservoir drops to its redline of 20.

And then it gets stuck, and doesn’t adjust back up once the virus is gone. Now you feel too tired to do anything once you’ve used 30 units instead of 80. Or whatever the numbers are. For me, this morning, it was more like being down to five percent of normal.

Who knows why it gets stuck. Dan Elton suggests various plausible theories, and I can think of others. They are interesting and might lead to preventions; but the cause may not matter for treatment.

He suggests two treatments. Cognitive-behavioral therapy may treat psychosomatic causes. Graded exercise therapy, i.e. gradually increasing exertion, may reset the governor higher, in the same way that running and weight lifting do normally. It “learns” that your body has more stored energy at baseline than it thought.

Graded exercise therapy is controversial and politicized as a treatment for chronic fatigue syndrome, which long covid resembles. Elton also cautions:

WARNING: do not attempt graded exercise in the early stages of Covid! There is a lot of anecdotal evidence that Long Covid is sometimes triggered by people rushing back to their normal activity levels or trying to exercise too early. The most important thing to do when recovering from Covid is to rest, at least initially. I do not recommend attempting graded exercise until three months after infection.

I started “pushing through” about two months in, and ramped it up for three months after that, just intuitively and not on the basis of any theory. And then the long covid was over.

Until a week ago.

What happened on the mountain?

Altitude sickness feels like covid. Many symptoms are the same.

Especially: the sensation of not being able to get enough oxygen. In covid, that’s because the virus is destroying your lungs. At altitude, it’s because there isn’t enough oxygen.

So—this is my crackpot theory, and I’m sticking to it—my fatigue governor remembered what covid was like, and knew exactly what to do about it. Adjust the fatigue threshold way down, to conserve energy.

And then it stuck there for a week.

It might have stuck for months. Except I said no, fuck you, I’m going for a run, and demonstrated to it that I have six miles of cardiovascular exertion available if I ignore the fatigue alarm.

And now it’s reset, and I feel energetic and sharp, and I’m tempted to go and run another six miles this afternoon just to emphasize the point in case it feels like playing dumb later. (Six miles is more than I usually run when healthy.)

[I wrote this ten days before publishing it. The reset seems to have been permanent as well as immediate; I haven’t had long-covid-like symptoms since.]

So what?

I wrote:

If you have similar debilitating symptoms, this could be important to check. On the other hand, it’s unlikely that this is the cause for you, even if it was for them. And, taking huge doses of zinc can cause other trouble, so you’d need to be careful.

This is an N=1 report. N=2 if you count Dan Elton (but he also applied psychological treatments and I didn’t). N=4 if you count the two doctors whose theories he drew on. We could all be fooling ourselves, or just lying, or this post may have been written by a statistical text generator (“AI”). You don’t know.

My guess is that pushing through will work for some fraction of long covid fatigue cases.¹ I’ve no idea what percent.

If you’ve got that, you could try it.

That might be a disaster, if resting for months or years is the true best treatment, and exercise sets you back badly. I have no idea.

The method is a curse

Gríma Wormtongue (CC) RedDeadSakharine

I rarely use swear words in my writing. They offend some people needlessly, and are a too-easy way to add emphasis.

I made an exception in this post, because it seems important.

To push through the fake fatigue, I have to treat it with aggressive contempt. It doesn’t work to be nice.

The false fatigue alarm says it’s on your side, and it keeps telling you that you deserve a break; you don’t need to be doing this; it’s better not to push so hard; you can exercise once you’ve fully recovered. It’s like Gríma Wormtongue whispering in King Théoden’s ear. Gandalf’s rebuke:

“The wise speak only of what they know, Gríma son of Gálmód. A witless worm have you become. Therefore be silent, and keep your forked tongue behind your teeth. I have not passed through fire and death to bandy words with a serving-man till the lightning falls."

There was a roll of thunder. The sunlight became blotted out from the eastern windows; the whole hall became suddenly dark as night. The fire faded to sullen embers. Only Gandalf could be seen, standing white and tall before the blackened hearth.

Fuck you, long covid, you are a fucking liar.

1. My casual reading of current research suggests that long covid is not a single unified condition, but several different long-term consequences of infection, with different underlying mechanisms. Fatigue is a symptom of practically everything, and different forms of long covid may produce it by different means, for which different treatments might be effective.