New study measures the frequency of covid vaccine injuries
People can get an autonomic disorder called POTS from both covid and covid vaccines.
Critics of the covid vaccines often talk about “vaccine injuries”. I think it’s not the best term. It makes it sound like someone was hurt by the needle. It also lumps every negative vaccine reaction together.
There are actually a lot of different things that can go wrong, some mild and some more serious. On one end of the spectrum, there are common and harmless side effects of covid vaccines, like getting a fever that resolves in a few days. On the other end, there are some serious side effects, like blood clotting or myocarditis, but they’re quite rare. Myocarditis affects about 1 in 50,000 people, or maybe more like 1 in 10,000 young men that get the Pfizer vaccine.
In between those two, there’s a condition where some people develop symptoms similar to long haul covid after receiving a covid vaccine. A better term for this would be “vaccine long haul” instead of “vaccine injury”.
This seems to be less common than long covid, but there hasn’t been enough research measuring how common it is.
One common symptom of both long covid and vaccine long haul is POTS, or Postural Orthostatic Tachycardia Syndrome.
POTS is a disorder of the autonomic nervous system where your heart starts racing every time you stand up. Here’s what it looks like, for one POTS sufferer:
POTS is not a fatal disease but, as you can see, it’s one that seriously impairs your lifestyle. This woman is out of breath, with a heart rate of 150 BPM any time she stands. She will also sometimes faint while standing or even after standing.
With POTS, nerves malfunction and blood pools in a patient’s legs. The heart beats faster, in part to try to get more oxygen to the brain. Patients often experience brain fog:
That Youtuber is not a covid long hauler, she was sick before the pandemic started. People got POTS for a variety of reasons, before the pandemic. Viruses are the number one cause, but other vaccines are known to sometimes cause this:
A new study published in Nature compares the frequency of POTS after both covid vaccines and covid infections, to try to get a better idea of vaccine safety.
The study was done in Los Angeles. Researchers followed 284,000 people who’d had a covid shot and 13,000 who had a reported covid infection.
It was a self-controlled study — to measure the frequency, researchers counted the number of POTS diagnoses in the 3 months before each person got vaccinated, compared to the 3 months afterward.
In the 3 months before vaccination, 501 people were diagnosed with POTS. In the 3 months afterward, 763 were diagnosed.
We could say that’s 262 excess cases and blame those on the covid vaccines. That’s 0.09%, or a 1 in 1,100 chance of getting POTS.
Women were more likely than men to get POTS. The reaction happened with all 3 of the covid vaccines, Pfizer, Moderna, and Johnson and Johnson. The odds look roughly the same for all 3 of the vaccines.
1 in 1,100 is neither a huge risk nor something to be laughed at. In the United States, we’ve given covid vaccines to more than 200 million people. With those odds, you’d expect that 180,000 Americans now struggle to stand up because they had a bad reaction to a covid vaccine. The condition is long-lasting. Some people recover in under a year, but others are still struggling with it almost 2 years after vaccination. There are several drugs that reduce the symptoms, but we haven’t found a cure.
The researchers also looked at POTS cases after people caught covid. In that case, they found the odds were 1 in 90 that you would get POTS after covid. That’s about 10 times higher than after a vaccine.
In the case where we did nothing and everyone in the US got covid, we’re talking about 1.3 million people with POTS.
The authors conclude: the risk is higher from covid than from the vaccine. Therefore, it’s good to get vaccinated. Case closed.
Unfortunately, it’s not quite that simple. This study gives almost as many questions as it does answers.
There are a lot of other issues we need to consider:
1. Covid vaccines no longer stop infection.
Covid vaccines were highly effective at preventing infection, back in 2021. They were maybe 90% effective against alpha, 80% against delta. Since Omicron, things have been different. Vaccinated people regularly catch covid, though they don’t get as sick. They’re much less likely to end up in the hospital or die.
If you can still catch covid, you can still get long covid. Studies disagree on the exact numbers, last I checked we think being vaccinated only reduces long haul risk by about 15%.
So, now you face a risk when you get the vaccine, a risk when you catch covid, another risk when you get a booster, another risk when you get reinfected.
2. The study didn’t consider mild or asymptomatic covid cases.
The vaccinated group is not the same as the covid infected group. There were 280,000 vaccinated people in this experiment and 13,000 covid-infected people. The vaccinated people averaged 56 years old, the covid-infected people were 60.
But these were only recorded covid infections. Lots of other people might have gotten a mild case of covid and never tested for it, or they tested at home and never told their doctor. Suppose there’s some systematic bias here, that people who test for covid when they’re not as healthy or when covid makes them sicker. So, the odds of getting POTS might be 1 in 90 for this group. But it might be lower if you include milder cases.
The base rate for POTS was higher in the covid infected group. In the 3 months before getting sick, 0.99% of them got a POTS diagnosis, as compared to 0.18% in the vaccinated group. In the 3 months after getting sick, 2.1% got a POTS diagnosis.
If you correct for that, then covid is only twice as likely to give you POTS as the vaccine is, not 10 times more likely.
An editorial by authors Blitshteyn and Fedorowski does the math a little differently — they include several other diagnoses besides POTS and conclude the virus is 5.3X more likely to harm someone than the vaccine. But they don’t consider that the vaccinated group and the infected group aren’t comparable — one group may be healthier than the other.
They try to justify this 5.3X ratio by pointing to the pre-covid relative risk between vaccines and viruses, and showing that these are similar:
But covid is new, and the covid vaccine is new, so we don’t really know if the ratio should be the same as vaccines for other diseases.
We should study data from other places to try to confirm these numbers.
3. The vaccinated group could also have undiagnosed covid cases
The base rate of 1% POTS diagnoses in 3 months is very high. The covid infected group is obviously not a random set of people. Before the pandemic, at most 1% of people in the US had POTS.
The base rate might also be too high in the vaccinated group — 0.18% of the vaccinated group got POTS in 3 months. If you forecast that out, that’s 0.72% in a year, or 7.2% in 10 years.
That doesn’t seem to line up with 1% of the country having POTS. The only way those numbers could both be right is if most people quickly recover from POTS. But POTS seems to be a long-lasting condition for many sufferers — I’d be surprised if 0.72% came down sick every year and less than 1% of people had the condition, in total. That would mean the vast majority recover in under a year.
There’s one reason why the base rate might be too high — it’s possible that many of the vaccinated group got POTS from mild covid cases that went unreported.
In that case, we’re back to, “the virus is much worse than the vaccine”.
4. There might be uncounted POTS cases
POTS is somewhat hard to diagnose. Any doctor can do a simple test by just watching their patient standing and sitting. But some patients might not know what to ask for, they might complain about a heart problem and the doctor may run tests for that, when POTS is really a nervous system problem.
Also, some people might simply not see a doctor.
The number of undiagnosed cases could be the same for the virus and the vaccine, so the ratio is the same. It could also be different, if doctors don’t take vaccine long haulers as seriously as long covid patients.
Suppose half the cases are not diagnosed. Then the odds of POTS after the vaccine would be 1 in 550, not in 1,100. After covid, it could be 1 in 45. There could be more people disabled by the pandemic than we think. It might be enough people that it’s contributing to labor shortages.
5. We don’t know if the risk is cumulative
People who get vaccine reactions often get a relapse in symptoms when they get covid. In one podcast, vaccine-injured influencer Brianne Dressen talks about her relapse when she caught covid, and also speculates that she might have still become a long hauler, had she caught covid before getting vaccinated.
On the other side, some 30–40% of covid long haulers report worsening symptoms when they get a covid vaccine. About 50% reported that getting the vaccine actually improved their long covid symptoms.
It’s possible that some people are predisposed to getting long haul symptoms and others aren’t. This could be a genetic difference.
In that case, the number of long haulers will approach a steady value as everyone gets exposed to either the virus or the vaccine. Beyond that point, some people might be able to get infected or vaccinated as many times as they want, with no additional risk.
It’s also possible that there’s a cumulative risk for everyone. I’ve talked to people who got 3 shots and then reacted to the 4th. I’ve also talked to people who got 3 shots and then got long covid from Omicron. Maybe we all face a small risk with every exposure.
Suppose the risk of getting POTS is 1 in 90 from every covid infection. Suppose that we all decide to “live with the virus” and catch covid twice a year, going forward. After 10 years, about 8% of people are long haulers with POTS. It wouldn’t take long before that ruined the economy, and eventually ruined most people’s lives. In a lifetime of exposure, about half of all people would be affected.
In that case, getting 2 booster shots every year would also get us to the same place where lots of people have long haul, but it would get us there maybe 2 to 5 times more slowly.
Does this new study change the conversation on vaccines?
In the last year, I’ve talked to some patients with POTS who had doctors refuse to connect their diagnosis to the vaccines. I’ve talked to others who were taken seriously and got treatment regardless.
If nothing else, this study should help some patients get taken more seriously by their doctors.
Beyond that, it helps us understand the scope of the problem.
Suppose that 200,000 people have POTS, thanks to the covid vaccines, and have a greatly limited lifestyle for a few years before they recover.
Should they get paid by Pfizer and Moderna?
In some countries, people are compensated. In others, the vaccine makers are not liable:
In the United States, covid vaccine injuries are covered under a program called CICP, which pays out unreimbursed medical expenses, up to $50,000 in lost wages, and a survivors benefit of $370,000 in the event of death.
New studies like this should hopefully make it easier for someone to fill a claim and get help. If POTS is a proven side effect of the vaccine, the government will be more likely to pay. But the program might not help anyone who’s already been injured. There’s a 1 year statute of limitations in filing.
It also looks like the program is not quick to pay anyone. There have been about 10,000 claims filed for covid vaccines. Only 39 of those people were compensated. 413 had their claim rejected. More than 9,000 are still under review. The biggest problem might be that there’s no funding or support towards reviewing any of these claims.
If we want people to not be vaccine-hesitant, we need to be honest about the risks, and also open to helping them when something does go wrong.
That also brings up a bigger question. If we’re willing to help vaccine injured people, should we also help the larger number of people injured by covid?
Suppose we had a world where it’s easy to sue the vaccine makers for billions of dollars. Maybe they would spend years testing drugs for safety. In the meantime, everyone would get covid, millions would die, and millions would get POTS or other long covid symptoms. The people that would get POTS might be exactly the same group as those who were vaccine injured, if there’s a genetic component to who’s at risk.
It might also be hard to design a covid vaccine without this risk. In the recent study, people got POTS from Johnson and Johnson, as well as the mRNA vaccines. We don’t have data for Novavax, but that vaccine seems to share the other known side effects of covid vaccines, I would guess that it can cause POTS as well.
I’m not sure how we balance out the incentives — we want a system that gets drugs and vaccines out quickly enough to stop a pandemic. But we should also do a better job helping the people harmed by those drugs.
Because the vaccine is still safer than the virus, I don’t expect that this study will change many minds.
At this point, the pro-vaccine and anti-vaccine debate is entrenched. In the US, where you stand usually corresponds with your politics. Liberals are pro-vaccine, concerned by covid, and believe in long covid. Conservatives are more likely to be anti-vaccine, less afraid of covid, and many don’t believe that long covid even exists.
Neither extreme is rational. If you’re afraid of the vaccine, you should be even more afraid of long covid, not denying its existence. The side effects of both are the same, and the virus is worse.
If you’re afraid of covid, you should be somewhat cautious of the vaccine. Every shot involves a small, calculated risk.
In 2021, the decision was pretty clear that getting vaccinated was better than getting covid. In 2022, it’s not as clear. The value of the first 2 shots is the highest. After that, you should have a long-lasting B and T cell response that will help prevent severe covid.
After that, each additional shot is a similar risk for less benefit. With myocarditis, the risks of getting a booster shot appear to be about the same as the first time you got vaccinated. But you’re already protected against severe disease, so the total effect of the booster is less.
We don’t know if the risk of getting POTS is cumulative. Whether it goes up or down with boosters. Whether some people are more susceptible than others or whether it’s cumulative for everyone.
There’s likely a balance for each person. If you’re 65 years old and at high risk of covid, getting every booster shot is likely a good idea.
If you’re a 20-year-old male, getting boosted repeatedly comes with a high myocarditis risk and little additional benefit.
In between, we don’t know exactly where the thresholds are. It probably depends on your age, and how much exposure you have to covid.
Perhaps the most important lesson is that people that are susceptible to long covid will stay susceptible.
I mostly screencap crazy anti-vax comments, but here’s a rare case where I screencapped a crazy pro-vax comment, left on Katelyn Jetelina’s substack:
This person should have been advised to not get a booster shot. She should not even be considering the 4th shot. If the shot injured you once, don’t get it again. If you have long covid, you might not want to get boosted. You might want to plan to take a drug like Paxlovid, instead, if you get sick. And, if you don’t want to get sick at all, masks still work.
