When the System Doesn’t Have a Box for You
A Virtual Care Directory for Chronic Pain & Complex Illness in Canada
If you live with chronic pain or complex illness, you already know the loneliest part isn’t always the symptoms. It’s the in-between — the years spent without a clear diagnosis, the appointments that end in a shrug, the feeling that you’re carrying a body no one seems equipped to explain. I know that terrain both as a Registered Clinical Counsellor who works exclusively with chronic health conditions, and as someone who has lived it from the inside. Out of that experience, I built something I wish I’d had at the start: a Virtual Care Directory for Chronic Pain & Illness in Canada. It’s a living collection of clinicians, clinics, testing options, and patient resources for people who keep falling through the cracks of conventional care. This post walks through some of what’s in it — with a focus on one of the hardest areas to navigate: dysautonomia and autonomic conditions like POTS.
Why a directory at all?
Conditions like ME/CFS, fibromyalgia, POTS, MCAS, and the broader family of autonomic disorders sit in the gaps between specialties. A cardiologist may not look at the nervous system; a neurologist may not look at the heart; and many family physicians simply haven’t been trained in conditions that don’t show up on a standard panel. The result is that patients become their own case managers — often while exhausted and unwell. The directory is meant to shorten that search. Below are the paths I point people toward most often when autonomic dysfunction is on the table.
Conditions like ME/CFS, fibromyalgia, POTS, MCAS, and the broader family of autonomic disorders sit in the gaps between specialties. A cardiologist may not look at the nervous system; a neurologist may not look at the heart; and many family physicians simply haven’t been trained in conditions that don’t show up on a standard panel. The result is that patients become their own case managers — often while exhausted and unwell. The directory is meant to shorten that search. Below are the paths I point people toward most often when autonomic dysfunction is on the table.
Testing: where to start
Tilt table testing (BC) If a tilt table test has been suggested to you and the public wait feels impossible, it can be done at Burnaby Neurology. A tilt table test measures how your heart rate and blood pressure respond to changes in position — a core investigation for POTS, orthostatic intolerance, and syncope.
The NASA Lean Test (at home) You don’t always need a clinic to gather useful data. The NASA Lean Test is a simple, validated, at-home way to track orthostatic changes that you can bring to an appointment. It’s a helpful first step while you wait for specialist access — here is a NASA Lean Test handout and a set of dysautonomia medication handouts worth reading before you discuss treatment options. Specialists who understand the autonomic nervous system Finding a clinician who actually treats dysautonomia is half the battle. These are the names and centres I hear about most consistently in Canada and beyond:
Dr. Satish Raj — University of Calgary. Widely regarded as one of the foremost autonomic specialists in Canada. He founded the Calgary Autonomic Investigation & Management Clinic, the first clinic in western Canada built specifically for POTS and related conditions, and offers more specialized autonomic testing than is available almost anywhere else in the country.
Dr. Andrew Krahn — UBC, Vancouver. A cardiologist with deep expertise in heart rhythm and syncope, helpful when the cardiac side of autonomic dysfunction needs a thorough workup.
A virtual option in the UK — Professor Melvin Lobo. Professor Lobo runs the Barts Autonomic Laboratory in London and sees international patients privately. It’s private pay, but consultations can often be arranged far faster than the domestic wait — a real option when you need expert eyes sooner rather than later.
There are also physicians who work across the overlapping picture of ME/CFS, fibromyalgia, POTS, and MCAS together rather than in isolation. The full directory keeps an updated list — and I’m always adding to it as I learn of more.
Resources to learn from — and to bring with you
The Dysautonomia Project — a genuine goldmine of patient education, and a route to U.S. clinicians who treat these conditions.
Dr. David Goldstein’s Principles of Autonomic Medicine Book — a free, comprehensive text from a leading NIH autonomic researcher. It’s detailed, but it’s one of the best ways to understand your own physiology and to frame better questions for your care team.
Dr. Melvin Lobo’s Postural Tachycardia Syndrome Textbook - A leading expert in the management of postural tachycardia syndrome (PoTS). He is a Consultant Cardiovascular Physician and Director of the Bart's Blood Pressure Clinic, which is recognized as a Hypertension Centre of Excellence by the European Society of Hypertension. Dr. Lobo's work focuses on blood pressure disorders, including PoTS, and he has been involved in numerous clinical trials and research.
A tip that many patients find useful: you can upload a reference like Goldstein’s book to an AI assistant and work through your own test results and symptom patterns against it. It won’t replace a clinician, but it can be a surprisingly informative way to prepare for an appointment and to feel less lost in the language.
You deserve to be looked after Not getting a diagnosis doesn’t mean nothing is wrong. It often means you haven’t yet reached the person who knows what they’re looking at. The point of this directory is to make that person easier to find — and to remind you that the exhaustion of self-advocacy is real, valid, and not a sign you’re doing anything wrong. If this is the season you’re in, you’re welcome to explore the full Virtual Care Directory. And if the emotional weight of navigating chronic illness is part of what you’re carrying, that’s exactly the work I do at The Woods Counselling — alongside you, at your pace.
A note on this post: This is general educational information, not medical advice. I’m a Registered Clinical Counsellor (MA, RCC), not a physician, and the clinicians and resources mentioned here are shared for navigation purposes only — not as endorsements or referrals for your specific situation. Please make care decisions together with a qualified medical provider
