Risk of Severe Myalgic Encephalomyelitis from COVID Infection

I think one of the things that makes it easy for some people to dismiss long COVID risk is that it is often represented in media as a hazy mishmash of different possible issues and symptoms. Although long COVID is seriously debilitating for many people, that mishmash is hard to conceptualize if you aren’t experiencing it. So I thought it might be useful to talk about COVID risk in terms of a subset of long COVID that we have a more concrete understanding of: the patients who end up with COVID-induced severe myalgic encephalomyelitis (aka ME/CFS).

Severe ME/CFS is profoundly disabling and recovery is very rare. Generally, severe ME/CFS patients are those who are “housebound or bedbound…typically needing to use a wheelchair, unable to do any kind of work or study, and often unable to do basic self-care activities unaided”. But that description really doesn’t do it justice. Severe ME/CFS is living for years on end in a state of living death, and if that sounds like hyperbole, read the accounts of Whitney Dafoe or Diana Cowern‘s experiences. One of the phrases you’ll hear from severe patients if you spend enough time in the patient community is “I had no idea it was possible to be this sick and not be dead.”

So let’s talk about the odds that that is where you end up after a COVID infection.

The WHO says the average risk of long COVID for everyone, vaxxed or unvaxxed, is 10% per infection. This is on the low end of estimates I’ve seen, but doesn’t seem outside the realm of possibility. For how protective vaccines are against long COVID, I’ve seen a range of estimates in various studies from 15% protection to 100% protection. Given how many people there are in the long COVID community who were fully vaxxed and boosted when they got long COVID, it definitely isn’t 100%.

As an aside, I also do not think that there’s any reason to believe that the risk is lower for kids. I do not believe that kids are less infectious or less vulnerable to long COVID. In general, estimates for general long COVID prevalence and prevalence in kids are similar. Given that kids are generally less vaccinated than adults, I’d argue there’s some reason to think they are, on average, more vulnerable than adults proportionate to how much less vaccinated they are.

From what I’ve read, and with the WHO guessing an average risk of 10% and a lot of pre-vax risk estimates converging around 20%, I’d say a could-be-optimistic-but-well-within-reason guess at post-vax risk of long COVID is 5%. From here on out we’re focusing on post-vax numbers.

Studies seem to generally agree that roughly half of long COVID cases meet ME/CFS diagnostic criteria. If accurate, that’s 2.5% of post-vax COVID infections leading to ME/CFS.

The lifetime recovery rate from ME/CFS is usually quoted at around 5%. I would guess that the recovery rate for LC-induced ME/CFS is likely to be better than that, because it is getting caught earlier, on average, than most cases of ME/CFS are and the earlier in the illness, the more likely recovery is. How much better is very hard to say. A recent study in The Lancet that followed 548 long COVID patients over two years found a 7 or 8ish percent recovery rate in the first two years (though this study was not specific to the ME/CFS subtype).

Let’s be optimistic (and favor easy math) and call it 20%.

So 2.5% of infections leading to ME/CFS. If we assume that 20% recover at some point, then 2% lead to ME/CFS that patients will never recover from.

How severe are their cases?

With ME/CFS, a 2019 study of 1086 patients found 56.8% were not working, so just to be clear: by the standards of any other disease, almost every case of ME/CFS is severe in terms of what it does to your life. Having any amount of ME/CFS will fundamentally change your life and what is possible for you going forward (and this is the case for many of the non-ME/CFS varieties of long COVID as well).

The generally accepted number for how many ME/CFS patients are “severe or very severe” is 25%. LC-induced numbers right now are probably not that high yet, because many patients who end up severe do not start out that way. They progress to severe as a result of repeated exposure to ME/CFS triggers or by going beyond their energy envelope one too many times (for example, a lot of “mild” ME/CFS patients no longer have the energy capacity to hold down a job, but they have to, so they end up forced to consistently overextend, leading to becoming more and more severe over time until they can’t take care of themselves at all anymore). I suspect that eventually LC-induced ME/CFS numbers will mirror historical ME/CFS numbers, but in many cases it will take time to get that bad.

As an aside: if you know someone whose health hasn’t been the same since their last infection and who is deteriorating as they try to push through, make sure they know about COVID-induced ME/CFS and the importance of resting and pacing. Pushing through is the most dangerous possible thing you can do (outside of catching COVID again), and it is important that anyone struggling after an infection knows that.

2% of infections leading to lifelong ME/CFS and 25% of those being severe leaves us with a ballpark of one in every two hundred infections eventually leading to lifelong severe ME/CFS. The people who end up in this group who don’t have family or social caretaking support or enough savings to pay for it indefinitely will probably die. Since this is per infection, if people keep getting infected every year, and especially if it’s 2-3 times a year every year, this risk is going to stack up and up and up and up.

If someone gets infected once a year, for example, over ten years that risk of severe ME/CFS goes from one in two hundred for just one infection to about one in twenty after ten of them. At 2-3 times a year, it’s more like one in ten over ten years. I’ll leave what the odds become over an 80-year lifetime of infections as an exercise for the reader.

There is a fair amount of guesswork here. The situation may be better or worse than this, though I think I have skewed my guesses slightly toward optimism. Because this is just for the severe subset of the ME/CFS subset of long COVID, it doesn’t include moderate or mild ME/CFS cases or the heart, lung, kidney, etc, organ damage issues and other things that don’t fall under the ME/CFS bracket. I also suspect that long COVID numbers in general don’t include people who get other illnesses (Parkinson’s, Alzheimer’s, diabetes, heart disease, etc.) as a result of their COVID infections. Other COVID-induced diseases are probably happening on top of the 10% of infections that get officially reported as long COVID.

Generally, we also know LC risk is significantly worse for women than men, and as you might guess, worse for non-white people than white people. The difference between men and women exists in ME/CFS, too, and is likely in part due to biological factors. For the rest, my money is on oppression being the driver of the difference (for example, LC and ME/CFS are associated with Mast Cell Activation Syndrome aka MCAS, and we know that Black people are often forced to live in more polluted neighborhoods than white people in the US, and pollution is a frequent trigger for and driver of MCAS issues), but I don’t know for sure.

So there it is. A one in 200 chance per infection of ending up on the severe end of one of the most profoundly disabling and nightmarish diseases there is. In my opinion, my numbers here or anything close to them are catastrophically bad, and especially so for young people who have a lifetime of COVID infections ahead of them if we don’t learn to take COVID seriously again. We are, to be blunt, systematically obliterating the health of a generation of children. To quote a recent paper in Nature: “The oncoming burden of long COVID faced by patients, health-care providers, governments and economies is so large as to be unfathomable.”

Together, for a safer Maryland.


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