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Patients with Power Profile picture
Patients with Power
@PtsWithPower
Patient-scientist fighting for medicine based in SCIENCE; NOT BIAS⚡Calling out harmful healthcare culture⚡Breaking down difficult doctor behaviour✍️🧐
Sep 1, 2025 • 4 tweets • 1 min read
When patients talk about being dismissed by doctors -or ignored, or gaslit- doctors say they’re overworked and don’t have the time.

But here’s the thing: Only doctors can organize, demand change, and fix that.
Patients can't.

1/ #NEISvoid #MedX Patients don’t set appointment lengths.
Patients don’t design hospital rosters.
Patients don’t control how many people a doctor sees in a day.

Doctors do. Or at least, doctors can - if they stand up to the system.

2/ #NEISvoid #MedX
Sep 16, 2024 • 5 tweets • 2 min read
If you have #hEDS / #HSD, check this out:

Specific fragments from the matrix that surrounds and supports the cells in our body - the extra-cellular matrix - have been found in the blood of people with hEDS and HSD.

They weren’t seen in healthy people. 🧵 Image showing extra-cellular matrix fragmentation patterns, labeled Figure 2. Text above it reads “As illustrated in Figure 2, showing the different fragmentation patterns identified through WB in plasma samples from healthy donors and those affected with hEDS, HSD, OA, PSA, RA, CEDS, and VEDS, our analysis unveiled a shared fragment pattern for hEDS and HSD, while revealing distinct patterns for OA, PSA, and RA.” And some of these fragments were unique to hEDS & HSD - they weren’t seen in other similar conditions, not even cEDS.

This means a blood test for hEDS & HSD could be on the way. 💉🩸
Apr 29, 2024 • 12 tweets • 2 min read
I wrote an explanation of why people with Ehlers-Danlos syndrome can have so many other conditions, using a car analogy. I'm posting it here in case anyone else wants to use it to help someone in your life understand 🧵 #EDS #hEDS "I have a genetic connective tissue disorder called Ehlers-Danlos syndrome. It’s a problem with the body's collagen (and some other connective tissue components). Collagens are found all throughout in the human body so faulty collagen can cause problems in lots of bodily systems.
May 12, 2023 • 12 tweets • 4 min read
You'd never guess - from the name - what Chronic Fatigue Syndrome 𝘳𝘦𝘢𝘭𝘭𝘺 is.
A lot of doctors don't know either.
🧵 According to current research, #MyalgicEncephalomyelitis (ME/CFS), otherwise known as "Chronic Fatigue Syndrome," is a neuro-immune condition with fluctuating physical and cognitive symptoms. The gloved hands of a scien...