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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

24/05/2026

May is EDS Awareness month….

Blog 4 0f 4: Where Should the Money Go? A Patient-Centred Case for Research Triage

Where should the research money go?
A 2025 international survey of 3,906 hEDS patients documented a mean of 24 comorbid conditions and an average diagnostic delay of 22.1 years. MCAS was over 1,000 times more common in hEDS participants than in the general population.
During those 22 years of delay, patients are not waiting. They are spending — money, energy, and health they cannot afford to spend — on interventions recommended by well-meaning clinicians working with an inadequate evidence base.
This week’s blog makes the case for research triage in hEDS, POTS and MCAS — directing scarce research effort toward the questions that would produce the greatest clinical benefit for the greatest number of patients in the most practical timeframe. Four priority trials are identified. None of them are radical. All of them are overdue.
This is the final blog of “What We Don’t Know” — a four-part evidence audit of treatment for hEDS, POTS and MCAS.
Read the full piece: https://open.substack.com/pub/tracyfinnegan/p/the-system-and-the-patient-when-healthcare-180?r=2onzck&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

17/05/2026

May is EDS Awareness month….

Have you been told to exercise more?
Drink more water and add salt?
Try a low-histamine diet?
Take magnesium, vitamin C, or one of a dozen other supplements?
Wear compression?
Pace yourself?
This week on The Loose Thread — an honest look at what the evidence actually shows for the lifestyle advice most commonly given for hEDS, POTS and MCAS. The advice is loud. The evidence is quieter than you might think.
Link in bio.

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

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