CFS. POTS. Post-concussion syndrome. ME/CFS. Dysautonomia.
If you've been diagnosed with one of these, you probably spent years trying to get that label. And now that you have it... what changed?
Often, not much. That's because these labels describe what you're experiencing — not why.
Syndrome Labels Are Collections of Symptoms
“The syndrome nomenclature isn't really that useful because you have a lot of different syndromes that have similar overlapping symptoms in them but they have different causes or different catalysts.”
Think about it: CFS is diagnosed based on fatigue, brain fog, post-exertional malaise. POTS is diagnosed based on heart rate changes. Post-concussion syndrome is diagnosed based on symptoms after a head injury.
But these labels don't tell you why you have those symptoms. And without knowing why, treatment becomes guesswork. This is why how chronic fatigue syndrome is diagnosed matters so much — the diagnostic process should move beyond the label.
A Better Question Than "What Do I Have?"
“The mechanism of why is more important than the symptoms themselves. So why are the symptoms there is a better question to ask and answer than 'do I feel them and how do I feel them.'”
Two people with identical CFS diagnoses might have completely different underlying mechanisms:
- One might have cerebral hypoperfusion (low blood flow to the brain)
- One might have mitochondrial dysfunction
- One might have vestibular problems
- One might have all three
The label "CFS" doesn't tell you which. And the treatment for each is different.
The Problem with Assumptions
When you join a CFS forum and everyone says "it's mitochondrial," you might start assuming that's true for you too. But assumptions aren't measurements.
“A lot of time we just make an assumption that there's a problem... if almost half of the group doesn't express the inflammatory protein, then we can't say that inflammation is the causality. And then we can't know if that is the cause or if that's the ambulance showing up at the accident.”
Seeing a biomarker doesn't mean it's causing your problem. It might just be showing up after the fact — like an ambulance at an accident scene. The ambulance didn't cause the crash.
What Can Actually Be Measured
Instead of fitting yourself into a syndrome box, consider what can be objectively tested:
“Two of the tests you got to look at right away are transcranial Doppler on a tilt and end-tidal capnography. We know huge percentage of cases — 90 plus percent in the cerebral hypoperfusion case and 70 plus in the hypocapnia case.”
These aren't subjective symptom questionnaires. They're measurements. They tell you what's actually happening in your body when you stand up.
Other objective tests include:
- Eye movement testing (VNG) — Do your eyes track normally?
- Vestibular function testing — Is your balance system working?
- Cognitive testing — Where specifically is processing breaking down?
- DMX imaging — Is there abnormal motion in your cervical spine?
“I can measure my eye movements. I can see if they're doing the thing we expect them to do. I can measure my reflexes. I can see if they do the things they're supposed to do. I can do cognitive tests, see if it does the things supposed to do.”
Learning more about autonomic testing can help you understand what objective measurement looks like.
Moving from Syndrome to Mechanism
The goal isn't to abandon your diagnosis — it's to move beyond it.
“You really want to move toward a diagnostic process that takes you out of the syndrome and into the mechanism.”
Once you know the mechanism, you can address it specifically. If blood flow regulation is the issue, you work on that. If it's vestibular, you work on that. If it's cervical, you work on that. Understanding whether functional neurological disorder overlaps with POTS can also clarify the diagnostic picture.
This is more useful than trying to figure out which syndrome checkbox you fit into.
Key Takeaways
- Syndrome labels describe symptoms, not causes — they tell you what, not why
- Different mechanisms can produce identical syndrome presentations — treatment must match the mechanism
- Assumptions aren't measurements — biomarkers might be "ambulances at the accident"
- Objective testing exists — transcranial Doppler, VNG, capnography can identify actual mechanisms
- Move from syndrome to mechanism — this is where useful treatment starts
Have the Label but Still No Answers?
If you have a diagnosis but still don't know what's actually driving your symptoms, a free consultation call can help you move from syndrome to mechanism.
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