What I wish I'd known earlier

Three years in, I think about what I wish someone had told me at the start — in the first months when I was still hoping this would resolve on its own, and then later when I was trying to work out how to actually manage it. Here is that list.

Normal blood tests don’t mean nothing is wrong

This was the biggest mental obstacle to getting help early. Every blood test came back normal. My GP was satisfied; I was confused. I felt genuinely unwell — not in a vague way, but in a specific, daily, limiting way — and the test results seemed to contradict that.

The tests that are abnormal in post-viral autonomic dysfunction are generally not the ones routinely ordered. A full blood count, thyroid function, and metabolic panel don’t measure autonomic function, small fibre nerve integrity, or the specific cardiovascular response to standing up. Normal results on these tests don’t rule out what’s actually happening.

Understanding this earlier would have saved me months of uncertainty and apologising for my own symptoms.

The name for what you have matters less than the features

I spent a long time trying to get a specific diagnosis — POTS, ME/CFS, long COVID, dysautonomia — partly because I felt like a diagnosis would unlock treatment and partly because having a name for something makes it easier to research and communicate.

The name does matter, eventually, for referrals and treatment access. But the more important question is what your specific body is doing. Is there post-exertional worsening? Is there orthostatic tachycardia? What is the heart rate doing at rest and on standing? What makes symptoms better or worse?

The answers to these questions drive management — and you can track them and act on them before a formal diagnosis is in place.

Measure things early

I wish I’d started tracking heart rate, HRV, and standing-to-lying heart rate difference much earlier. The data I would have collected in year one would have been useful in year two and three for understanding whether things were changing, and for giving clinicians objective information.

“I feel worse when I stand up” is much less convincing than “my heart rate rises by an average of 35 bpm on standing, as documented in 60 days of wearable data.” If you have a wearable device that tracks heart rate and HRV, start using that data now.

Pacing is real and important — and harder than it sounds

Before I understood post-exertional malaise properly, I managed my energy the way I had before I was ill — push through on bad days, rest afterwards, assume it would balance out. It didn’t balance out. The pattern was: effort, crash, repeat, with each crash potentially worse than the one before.

Pacing — staying within an activity envelope that doesn’t trigger crashes — is the single management approach most consistently supported by patient experience and emerging research. It’s not about doing nothing; it’s about doing things in a way that doesn’t make you systematically worse.

The difficulty is that the safe level of activity is usually lower than it feels in the moment, and you only find out you’ve exceeded it 12–48 hours later. This makes learning the safe limit slow and the cost of misjudging it high.

You have to be your own advocate in the NHS — but there are ways to do it well

The NHS is not set up to efficiently investigate and manage post-viral conditions. Post-viral dysautonomia is not in the standard diagnostic pathway at GP level; most GPs haven’t been trained in it; and the referral journey to the right specialist can take years if you’re not proactive.

This doesn’t mean the NHS can’t help — it can, once you’re in the right place. But getting there requires knowing what you need, framing it in language that gets you referred, and being persistent without being dismissed as anxious or difficult.

I’ve written about this approach in more detail here — specifically for GP appointments, where the most important decisions about what to investigate next get made.

A few principles:

Come with specific, measurable symptoms (not “I feel unwell”), ideally with data
Know what investigation or referral you’re asking for, not just a general hope for help
Frame things in terms of physical measurements where possible
If you’re dismissed, try again — ideally with new data — rather than accepting a conclusion you know doesn’t fit

Knowing what not to do is as important as knowing what to do

I made things significantly worse in the first year by following advice that didn’t apply to my condition. Specifically: trying to push through fatigue and build up exercise, which is appropriate for deconditioning after a physical illness but harmful for someone with post-exertional malaise.

Understanding graded exercise therapy (GET) — what it is, why it became standard advice, and why it causes harm in ME/CFS and long COVID — is important. The 2021 NICE guideline update removed GET from its recommendations for ME/CFS following evidence of harm. But clinicians trained on older guidelines still sometimes recommend it. Knowing that this isn’t appropriate for your situation, and being able to articulate why, matters.

It’s worth seeking out specialist knowledge

Most clinicians — GPs, general physicians, even many cardiologists and neurologists — are not specialists in post-viral autonomic conditions. This is not a criticism: these are relatively recently characterised conditions and specialist knowledge takes time to disseminate.

What this means practically:

Long COVID clinics exist in many NHS trusts and have more familiarity with this presentation than general medicine
POTS clinics and autonomic specialist centres (most are in tertiary hospital settings) are the right destination for formal autonomic investigation
There are patient organisations (Dysautonomia International, ME Association, Long COVID Support) that have distilled a large amount of practical knowledge and maintain lists of knowledgeable clinicians

Getting to the right specialist can take a long time in the NHS. Knowing that you’re looking for someone with specific expertise, rather than waiting for any doctor to figure it out, shortens the timeline.

The internet can help and harm

The patient communities around long COVID, ME/CFS, and POTS contain a large amount of useful, accurate, peer-reviewed information about these conditions — often ahead of what’s in clinical guidelines, because patient experience accumulates faster than clinical trials publish. They also contain a significant amount of misinformation, false hope, and proposed treatments ranging from ineffective to actively harmful.

The skill is in knowing how to distinguish between them. I’ve found it useful to look for:

Proposed mechanisms that are consistent with what is known about the biology
Interventions with at least preliminary evidence, not just patient reports
Sceptical voices within communities as well as positive ones
The difference between “this helped me” (useful signal) and “this will cure you” (unreliable)

The evidence reviews on this site are my attempt to apply this kind of reading to specific interventions — not to tell you what to do, but to give you the basis for a more informed conversation with a clinician.

It doesn’t have to be all-consuming

For a long time, managing this condition consumed a disproportionate part of my mental energy — researching, tracking, worrying, trying things, reading about things. This is partly necessary, especially in the early phase when you don’t yet understand what’s happening. But it can become a way of avoiding acceptance of the current situation.

At some point the goal shifts from understanding everything to living as well as possible within the constraints that exist, with the hope of those constraints reducing over time. Tracking and measurement in service of that goal is useful; tracking and measurement as an anxious response to uncertainty is less so.

I haven’t fully solved this, but I’m more aware of the difference than I used to be.

I’m not a clinician. Everything here is my own experience and reading. For the conditions described on this site, see the posts I’ve written on the evidence — starting with Long COVID, ME/CFS, POTS, dysautonomia, post-viral syndrome: making sense of overlapping conditions — and discuss any specific decisions with a healthcare professional who knows your situation.