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RN (ICU) non-practicing · Patient-scientist · Founder of ConnectED · Harvard Medical School AI in Healthcare, top 4 of 600 · IMB UQ Directors Circle - tracyfinnegan.substack.com - www.connectedhealth.au

09/05/2026

EDS Awareness Month 2026 — Blog 2 of What We Don’t Know is live.

This week: an honest audit of the medications most commonly prescribed for hEDS, POTS and MCAS.
What the evidence actually shows:
→ Cromolyn sodium — less than 1% absorbed systemically. Mechanism unresolved after 50 years. Evidence base built in a different disease entirely.
→ Antihistamines — 5 trials, 71 patients, 1983–1993. All in mastocytosis. All before MCAS existed as a diagnosis. And we use a positive response to antihistamines to confirm MCAS — which means the evidence and the diagnostic criteria are circularly dependent on each other.
→ Beta blockers — the strongest evidence in this blog. Still small trials. Still significant caveats.
→ Fludrocortisone and midodrine — extrapolated from orthostatic hypotension. Not validated in POTS-specific trials.
→ Ketotifen and quercetin — biologically plausible. Largely unevidenced in MCAS.
This is not an argument against treatment. It is an argument for honesty about what we know — and urgency about the research that still needs to happen.
Link in bio.

02/05/2026

EDS Awareness Month 2026.

This May I’m running a four-part series called What We Don’t Know — an honest evidence audit of treatments for hEDS, POTS and MCAS.
Not a takedown. Not anti-medicine. An honest look at what the evidence actually shows — and what it doesn’t — so patients and clinicians can make better informed decisions together.
Here’s what’s coming over the next four weeks:
→ Week 1 (now live): The evidence framework — why this matters and how we grade what we know
→ Week 2: Medications — cromolyn, antihistamines, beta blockers and beyond
→ Week 3: Lifestyle and diet — exercise, salt loading, low histamine, supplements
→ Week 4: Where should the research money go? A case for evidence triage
Patients with hEDS wait an average of 22 years for diagnosis. They deserve honest information about the treatments they’re being offered — including when the evidence is thin.
Link below in comments 👇

27/04/2026

The final blog of The Dysautonomia Journey series is live.
And it asks the hardest question of all.
Why does a system built entirely for the patient so consistently fail to serve them?
Not because of bad people. Because of structure. Language. Architecture. Assumption. Pattern.
Five stages of structural disadvantage — from the first word used to describe your symptoms to the system that determines what happens across years of your life.
All visible. All correctable. All named

LongCOVID ChronicIllness

Read it here 👇
https://open.substack.com/pub/tracyfinnegan/p/the-system-and-the-patient-when-healthcare?r=2onzck&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

www.connectedhealth.au

25/04/2026

MAY IS EDS AWARENESS MONTH……

The round peg isn’t the problem. The square hole is.
Throughout May we’ll be sharing content for the five audiences ConnectED was built for — patients, caregivers, researchers, clinicians, and the latest science. Come and find the conversation.
www.connectedhealth.au

25/04/2026

Hi, I’m Tracy. I built ConnectED because somebody had to. If you live with hEDS, POTS, MCAS or PASC (Coming soon in v2.0)— we have an app for you. If you’re a clinician trying to care for patients like us — we have a toolkit for you. If you’re just starting to wonder whether your body’s been trying to tell you something all along — start at connectedhealth.au.

20/04/2026

Have you ever been told your racing heart is anxiety?
Or that your brain fog is just stress?
There’s a precise clinical reason those words are used — and it’s not because they’re accurate. It’s because they don’t require investigation.
Palpitations is subjective. Orthostatic tachycardia is measurable.
Brain fog is colloquial. Mild cognitive impairment is clinical.
The word chosen before the investigation begins determines whether one happens at all.
Blog 3 of The Dysautonomia Journey explores exactly this — and what you can do about it.



Go to 👇

https://open.substack.com/pub/tracyfinnegan/p/palpitations-brain-fog-and-the-words?r=2onzck&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

18/04/2026

My grandmother Elsie would have said I came out of the womb looking for the loose thread to pull.
She wasn’t wrong.

For the patients medicine can’t yet name. And the clinicians starting to suspect why.

The Loose Thread — Substack, weekly.
The ConnecED Dots — Linkedin Month;y

ConnectED — the app, on both stores.
Links in bio 🧵
TheLooseThread ConnectEDHealth

18/04/2026

Tired of not being heard….. download the App today

18/04/2026

Everything hEDS, POTS and MCAS in one extensive, evidence based website. Download the ConnectED App today (search Tracsam Pty Ltd in the App Stores). Change the narrative, own your health story, communicate with confidence.
Women's Health Australia

14/04/2026

Your symptoms tell a story. Most tools weren’t built to read it.
ConnectED uses clinically evidence-weighted assessments across body systems — cardiovascular, autonomic, musculoskeletal, immunological — to identify patterns that standard clinical encounters routinely miss.
Built by a nurse. Tested by a patient. Validated by Harvard Medical School.
Download ConnectED 👇
www.connectedhealth.au

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