Patents With Power (@ptswithpower) • Threads, Say more 305 Followers • 24 Threads • Patient-scientist fighting for medicine based in SCIENCE; NOT BIAS⚡Calling out harmful healthcare culture⚡Breaking down difficult doctor behaviour✍️🧐. See the latest...

I'm still here, but you can also join me for more in-depth conversations over on threads if you like 😊 (500 character count - yess finally! 😆)
⚡ www.threads.com/@ptswithpower #NEISvoid

Isn't it wild? It's as if all the symptoms you came in with just disappeared💨 as soon as your blood test came back normal

Docs,
The blood tests don't need your help, the patient does. Treat the patient, not the blood tests.
#NEISvoid

Oops hashtag fail 😅

Patents With Power (@ptswithpower) • Threads, Say more 246 Followers • 20 Threads • Patient-scientist fighting for medicine based in SCIENCE; NOT BIAS⚡Calling out harmful healthcare culture⚡Breaking down difficult doctor behaviour✍️🧐. See the latest...

Hey #NEISvoid, I'm on threads if you'd like to follow me there 😊⚡
www.threads.com/@ptswithpower

Docs,

The blood tests aren't asking for your help, the patient is. Treat the patient, not the blood tests.

#NEISviod

People who have #depression are not addicted to our antidepressant medication.

People who have #ChronicPain are not addicted to our pain medication.

Me too, I feel you. 🫂🤝🩵

Yeah this is such a tricky problem.

My thinking has been to try to grow on social media and 'spread the word' for us to unite and organise, share my ideas and a plan, but every time I get established on a platform, the platform goes to shit - it's like sand slipping beneath my feet.

If we unite as patients and start to recognise the patterns in how we’re treated -or mistreated- in healthcare, we get stronger. There’s strength in numbers, and we’ve got numbers. #NEISvoid

All of us, pressuring the those in power to start treating sick people as human beings and ensuring that clinicians meet their basic job requirements and ethics codes.

Because it isn't just pwME that this affects, and that die from this. That is not to discount the
immeasurable suffering of #pwME.

I'm thinking more big picture - when I say 'we' I don't just mean people with ME, I mean all patients. Everyone who has a chronic condition and knows what it means to be abused by healthcare providers when you're vulnerable. #NEISvoid

Obviously we can't all stop taking our meds but I mean, appealing to compassion hasn't worked.

WHAT DO WE HAVE TO DO - go on a meds strike and hurt big pharma where the power's at, so they pressure the government on our behalf?? To start treating sick people as human beings and enforcing clinicians to meet their basic job requirements and ethical codes?
⚡️ #NEISvoid #disability #pwME #DoNoHarm

A screenshot of an article by the Canary which reads "an NHS hospital is starving a severe ME patient and now has stopped giving her fluids", published on 22 Jan 2026.

WHY is this happening AGAIN?

⚡️ www.thecanary.co/uk/analysis/... #NEISvoid #pwme #MECFS

I want to do this too.
"I explained I had symptoms X, Y, Z. I said I wanted to be tested for condition A as they are all classic symptoms. You said I didn't have condition A and didn't test for it. I've since been diagnosed with condition A. Listen to your patients. Sometimes we know more than you."

Thank you 💜

If we stop fighting for doctors to have awareness of each of our specific conditions, join forces and fight for doctors to start educating themselves and listening to patients, I feel like we might actually get somewhere.
⚡ #ChronicIllness #EDS #pwME

Docs,
How many patients have you misdiagnosed?
Trick question. You'll never know.
⚡ #MedSky #NEISvoid #eds #pots #pwme

THE LONG COVID ULTIMATE BINGO Grid showing lots of irritating comments people with long Covid and other chronic illnesses may hear said to them

Many with ME/CFS and other chronic illnesses may be able to relate some if not many of these

This was posted as a comment on my FB page today, but I'm not sure who created it originally.

#LongCovid #MEcfs #chronicillness #hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie

Doctors often don't go by the book when it comes to treating patients. They like to cut corners. They usually don't see the consequences of the corners they cut off. #ChronicIllness #Disability

(That is my "I come in peace" sunflower btw 😆 I just created it, but that was the sentiment - I appreciate your comments and spreading the word, and especially since you have ME too and I know the energy it can take to write multi-post comments 💜)

Oh, in the list, those are three different options: complex, invisible or rare. Not three different ways to describe the one set of conditions.

I was referring to conditions that really are rare - people who have them face a lot of disbelief and have a really difficult time getting a diagnosis. 🌻

But I am definitely with you that conditions are never really invisible and 'complex' is really not a helpful word to mean 'multi-systemic'.

I like medically neglected. Also, multi-systemic rather than complex.

I think of the terms as "too complex for your average physician, who doesn't want to learn" and "invisible to your average physician, who doesn't want to look"

- people who have visible tattoos, alternative-style piercings and hairstyles, or dress alternatively (i.e. "the blue hair sign")

Oh, here's a wild one:

- other healthcare workers

Great additions, thank you 💜

Can you think of any other groups that deal with extra bias in healthcare?

So far I've got:

People who have/are
- women
- not the dominant race
- mental health conditions
- complex, invisible or rare conditions
- different body shapes, thin/fat
- disabled
- age, old/young
- lgbtqa+

#NEISvoid

I'm so sorry about the way you found out your cervix was removed in the hysterectomy. It's not okay. 💜

I'm in the Trying Again stage after 3 years of refusing to see docs. I'm only seeing "patient-approved" ones who know my conditions, hoping it'll be different. Ugh god I hope it'll be different.