Not just COVID: what actually sets POTS off

POTS has been in the news since 2020, and almost always alongside COVID. That has done real good — more clinicians know what it is than did five years ago.

It has also left an impression that isn’t accurate: that POTS is a COVID thing.

It isn’t, it never was, and for the substantial number of people who developed it before 2020 or from something else entirely, the assumption is quietly isolating.

What we actually know

POTS often follows something. Frequently an infection, sometimes not. And often nothing identifiable at all.

*Viruses that have preceded it, in the literature and in patient accounts: Epstein-Barr, the virus behind glandular fever. Influenza. Enteroviruses. Various common respiratory infections nobody bothered to identify at the time. And now SARS-CoV-2.

*Non-infectious events too: surgery, particularly abdominal. Physical trauma, including concussion and whiplash. Pregnancy and the postpartum period. Sometimes puberty.

*And for a lot of people, nothing. No illness, no injury, no event. It began, and there is no story.

Why COVID changed the picture without changing the mechanism

COVID didn’t reveal a new condition. It produced an enormous number of people getting the same infectious trigger at the same time, which made a rare-looking condition suddenly visible at scale.

That has been genuinely good for people who already had it. Research funding. Clinician awareness. Specialist clinics that didn’t exist.

It has also produced an odd side effect: people diagnosed before 2020 sometimes find themselves explaining that no, this isn’t long COVID, they’ve had it since they were fifteen.

Why “what caused it” is often unanswerable

For most people, no test will identify the trigger. By the time POTS is diagnosed — often years later — whatever set it off has long gone, and there’s usually nothing left to find.

Which is unsatisfying, and worth saying plainly rather than leaving someone to keep looking.

*The cause and the treatment are largely separate questions. What helps tends to be the same regardless of what started it: blood volume, salt and fluids, compression, medication where appropriate, and graded reconditioning. None of that depends on identifying a virus from four years ago.

If it started after COVID

You have something real, common, and increasingly well described. You also have something that existed long before 2020, which means the research, the treatments and the patient community were already there.

That’s more useful than it sounds. You’re not at the beginning of an understanding — you’re joining one.

If it started before, or from something else

You are not unusual and you are not a footnote. POTS was here first.

If a clinician assumes long COVID, saying *”mine started after glandular fever in 2016”* usually resolves it in one sentence. The treatments are the same.

Our page on [what POTS is] covers the mechanism and the diagnostic criteria.

Pacecraft is an app that runs published POTS rehabilitation protocols. It launches in beta in August 2026.