iiinova — where your digital self keeps evolving

Patients with Power @ptswithpower.com · 01/09/2026

Docs, is there anything I could say to your colleagues that would help them not become nervous and defensive when as a patient (and a cognitive neuroscientist) I start talking about medical science and cautiously disagreeing with what they're saying? I'm thinking something disarming... 🤔 #MedSky

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Patients with Power @ptswithpower.com · 28/08/2026

Why is it that every time I have to describe something medical, people don't believe it till a doctor signs off on it. Imagine if they were like that about cars.. "I couldn't get my car started this morning" "Did a mechanic actually say it wouldn't start, or is it just you thinking that?" #NEISvoid

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Patients with Power @ptswithpower.com · 05/07/2026

The #NDIS. It's a support system for Australians with disabilities that, if it were functioning correctly, not only improves our quality of life, but also our ability to do our jobs. As a parents, family members, and in the workforce.

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Patients with Power @ptswithpower.com · 01/07/2026

Ask yourself "what is the doctor afraid of?" and you'll see the deeper problem What does a doctor - the one with all the power in the room - have to fear by stating in front of a patient, accurately and honestly "I don't know what's causing your symptoms"? Who are they trying to protect? #NEISvoid

A post by drcarolineantler which reads:
I don't think most medical gaslighting comes from malice. I think it comes from fear. Many providers know how limited their knowledge and tools are, especially when it comes to complex, chronic, or poorly understood conditions. But instead of owning that and staying curious, they shut down. They blame the patient. They project their discomfort onto us.
The ones worth trusting? They' re the ones who say,"I don't know, but I believe you."

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Patients with Power @ptswithpower.com · 01/07/2026

🩺 "It's rare, you probably don't have it." Doctors who use "rare" as a reason not to investigate are resting on flawed reasoning. Yes, any one rare disease is rare. But there are thousands of them. Taken together they're very common. #NEISvoid 1/2

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Patients with Power @ptswithpower.com · 23/03/2026

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

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Patients with Power @ptswithpower.com · 25/02/2026

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

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Patients with Power @ptswithpower.com · 26/01/2026

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

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Patients with Power @ptswithpower.com · 25/01/2026

WHY is this happening AGAIN? ⚡️ www.thecanary.co/uk/analysis/... #NEISvoid #pwme #MECFS

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.

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Patients with Power @ptswithpower.com · 13/01/2026

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

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Patients with Power @ptswithpower.com · 12/01/2026

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

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Reposted by Patients with Power

Tom Kindlon @tomkindlon.bsky.social · 04/01/2026

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

THE LONG COVID ULTIMATE BINGO

Grid showing lots of irritating comments people with long Covid and other chronic illnesses may hear said to them

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Patients with Power @ptswithpower.com · 08/01/2026

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

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Patients with Power @ptswithpower.com · 22/12/2025

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

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Patients with Power @ptswithpower.com · 04/12/2025

There's nothing to stop people with #narcissism or psychopathy from becoming doctors. They're protected by the assumption that people become doctors because they want to help people. In my experience, I've found some to just like the power trip. ⚡ #ChronicIllness #ChronicPain #NEISvoid #DoNoHarm

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⚔️KnightHawk🦅 @knighthawk899.bsky.social · 02/12/2025

It's really soul crushing going from doctor to doctor, "one more specialist" "one more test" etc then to be talked down to office space at every office and gas lit on top of that really just pours salt right in the wound. I shouldn't have to be the one doing the research, but I have no choice. 4/

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Patients with Power @ptswithpower.com · 02/12/2025

What have doctors done to retaliate against you, when you tried to correct them or advocate for yourself as a patient? I'll add some of mine below. ⚡ #NEISvoid #heds #pots #pwme

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Patients with Power @ptswithpower.com · 29/11/2025

I'm too busy helping people to learn how to help them properly. - Doctors everywhere #NEISvoid

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Patients with Power @ptswithpower.com · 29/11/2025

I want to share my story of harm in the healthcare system. ✍🏻 I just have such low energy and time, and I'm pretty nervous to put myself out there like that. People who have shared their story - do you have any advice? (about the above or anything) ⚡ #NEISvoid #ChroncIllness #Writing

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Patients with Power @ptswithpower.com · 18/11/2025

I love that there's heaps of doctors making audio recordings of their appointments now. Yes, they control the audio and never share it with the patient, but the step between now and mandatory patient-accessible recording of all healthcare encounters just got smaller. ⚡ #NEISvoid

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Patients with Power @ptswithpower.com · 10/11/2025

You have to baby doctors too. Like, if you're forced to mention a mistake they made - god forbid - you have to talk about it so delicately and phrase it as if it wasn't their fault. #NEISvoid

Screenshot of a quote-post by @lilleethaa which reads:
i hate doctors so much you literally have to manipulate them into doing their jobs. i've found doctors take me seriously when i act like i am unintelligent and uninformed. they don't like patients using medical terms. only they are allowed to know those words.

The quoted post is by @clowneatingpig and it reads:
Reddit is so horrifying be you can go to a sub for people with health problems and see tons of people desperate for help, strategizing on how to be taken seriously, and then you go to a doctor sub and it's full of professionals talking about hysterical women and blue hair.

The post has 6.2M views.

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Patients with Power @ptswithpower.com · 29/09/2025

Just another doctor-scammer using lies to make money. If you check out this guy's linktree & website, he's making 💵 off of vaccine lies in so many ways. He'll never stop telling them - they're making him rich & famous. These people are what keep the misinformation alive. #MedSky #NEISvoid

Screenshot of a post by Doc Malik @DocAhmadMalik which reads:
Long covid is simply covid vaccine injury.
SiDs is death of an infant from a vaccine.

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Patients with Power @ptswithpower.com · 22/09/2025

Art is great. You can use your art as a distraction and to feel good and to connect with others, but you can also use it as a weapon. And in these times where we can reach people's minds and hearts all over the world on social media, it's probably the best weapon we have.

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Patients with Power @ptswithpower.com · 21/09/2025

Medical gaslighting is like taking a cracked mirror to be repaired, and instead being told, “No, the glass is perfect. It’s your self-image that’s distorted.” Instead of looking for medical causes, the doctor flips reality, making the patient doubt their own perception. #NEISvoid #MedicalGaslighting

Shards of broken mirror lie on a table. A woman's face is visible reflected in the shards, looking straight into the camera.

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Patients with Power @ptswithpower.com · 05/09/2025

We REALLY need this. The number of careless errors, of serious symptoms overlooked, of biased judgements made and documented in my medical notes... it's mind-blowing. And it does so much harm. #NEISvoid #DoNoHarm

A tweet by @thePOTSpostman which reads:
"The problem with medical records is that they are doctor centered.
Every note in a patients chart is from the doctor's perspective.
Patients need a space to document their side of the story on how the appointment went.
We need notes that reflect both voices."

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Patients with Power @ptswithpower.com · 01/09/2025

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 #MedSky

A screenshot of an X-formerly-Twitter post by @literElly which reads:

It would be so cool if doctors could stop telling me things look "perfectly healthy" when test results come back and I go to look and the results are actually deeply concerning like I'm actually convinced most doctors don't know what they're doing.

I know that doctors have limited time and are overworked but if a patient has to consistently tell you to actually read the results and see that there's an issue that should've stuck out to you immediately, maybe you're not doing your job so well."

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Maxwell B Charles @maxwellbcharles.bsky.social · 30/08/2025

When a child dies from brain cancer or someone dies from the measles or gets polio, can they sue RFK Jr. and the regime for severe negligence and medical malpractice for taking away the scientific research and the vaccines? Serious question.

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Patients with Power @ptswithpower.com · 30/08/2025

The biopsychosocial model of medicine was meant to be holistic. Biology🩻 + psychology🧠 + social context🏘️ In theory: It's treating patients as whole human beings. In practice? It's weaponised against patients with conditions that doctors find "too hard". 🧵 #NEISvoid #MedEd

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Patients with Power @ptswithpower.com · 27/08/2025

Doctor, Don't assume you're more intelligent than I am. Don't assume your work's more crucial than mine. Don't assume your time's more valuable than my time. You're not more worthy of respect, than I. Sincerely, Your Next Patient ⚡️ #NEISvoid #MedSky #Poetry

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Patients with Power @ptswithpower.com · 21/08/2025

Being sick is a natural part of being human, yet sick people are dehumanised in healthcare all the time. Can you think of an example of this? Please add it below, I'm collecting them. 😊 ⚡️ #NEISvoid #MedSky #eds #pots #pwme #pwlc #mcas

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Patients with Power @ptswithpower.com · 20/08/2025

Being nice to patients isn't sufficient to be a good doctor, but it is necessary. #NEISvoid #MedSky

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Reposted by Patients with Power

Hannah Who @notablyuncool.bsky.social · 14/08/2025

If you love them, tell them. If they’ve changed your life, let them know. If they’re important to you, make sure they hear it from you.

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Patients with Power @ptswithpower.com · 20/08/2025

Doctors, Stop defending abusive & neglectful behaviour from other docs towards patients. Don't assume your colleagues were in the right. Often they weren't. If a patient has to tell you what happened to them, and you blindly defend the perpetrator, you make the trauma worse. ⚡️ #NEISvoid #MedSky

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Patients with Power @ptswithpower.com · 19/08/2025

Oh I love Nikita Gill but I hadn't seen this one before, thanks for sharing @jacysonne.bsky.social 💛🧡❤️ ⚡️ #DisabilityRights #PatientRights

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Ann Maycroft @audlyhearing.bsky.social · 15/08/2025

What saved my life when the hospital discharged me with no hope from my sudden paralysis? Facebook. Networking with my community who helped me find a surgeon who fixed me. Connecting with others who had the same diagnosis and recovered. *They* want online communities to go away. We can’t let them go

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Patients with Power @ptswithpower.com · 10/08/2025

I can imagine a medical system which treats all patients as worthy of care, worthy of investigation, & worthy as human beings. Where parities are protected from exploitation, neglect and harm. Where patients are truly equals, and our expertise is recognised. That's what I'm fighting for. #NEISvoid

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Patients with Power @ptswithpower.com · 10/08/2025

Did you know there's a big group of people who are too sick to access medical care, and too disabled to access disability supports? Sounds absurd but it's true. (We're too sick to protest, too.) ⚡️ #SevereME #pwME #pwLC #PatientRights #MillionsMissing #Disability #DisabilityJustice

A photograph from the Millions Missing protests in Melbourne. Thousands of sets of shoes are laid out across the pavement, stretching back as far as the eye can see. They're standing in place of their owners, people with (ME/CFS; myalgic encephalomyelitis) who are too sick to be there in person and protest the harm, medical neglect, societal neglect and poor conditions they're living with.

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Patients with Power @ptswithpower.com · 09/08/2025

Whenever a social group is given trust, prestige & power, there'll be people who don't take the position in good faith. 🚔 We've learned this with police ⛪️ We've learned this with priests 🩺 Now we need to learn it with healthcare providers. It creates a culture of cover-up, left unchecked #NEISvoid

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Patients with Power @ptswithpower.com · 06/08/2025

Docs, Your patients pay you to investigate their symptoms. Their symptoms don't just disappear when you get a scan back and it's clear. Stay curious Look, listen, ask You'll find the cause. (Hint: it's probably not stress or anxiety. You're not qualified to determine that anyway) #MedSky #NEISvoid

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Patients with Power @ptswithpower.com · 06/08/2025

People with #MECFS need access to support! Australia, this is the situation for people with this #disability in our country 👇🏼

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Patients with Power @ptswithpower.com · 06/08/2025

Undiagnosed = new symptoms blamed on mental health & lifestyle. Diagnosed = new symptoms blamed on pre-existing diagnosis. Docs, rule out as many medical causes as you can before making these assumptions. Errors here have devastating consequences. You may not ever see them. ⚡️ #NEISvoid #MedSky

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Reposted by Patients with Power

Chronic Pain Partners - EDS Awareness @cppedsa.bsky.social · 05/08/2025

Understanding Your Flare Fettered Friend - how to lend support for your loved ones going into a flare… buff.ly/WI3eZM1 #EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Fibro #Spoonies #Zebras #NEISvoid #Pain #CPP #ChronicPain #Support

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Patients with Power @ptswithpower.com · 06/08/2025

Anyone with a chronic illness in #Spain? What have your experiences been like, interacting with doctors? Does this thread reflect your experience too? I'd love to know. ⚡️ #NEISvoid #MedicalGaslighting #PatientRights #eds #pots #pwme #mcas

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Patients with Power @ptswithpower.com · 06/08/2025

Research matters! #Science is about discovery. Stop investing in science and you halt the progress of the human race. Or you know... just your country's. The #USA was the leader in so many fields. It's wild to think that could all be destroyed because a couple of rich guys want to be richer.

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Patients with Power @ptswithpower.com · 02/08/2025

So many patients are dealing with fear & inability to see doctors because of the way we've been treated in the past. Right now, we can't even explain this to our GP. They have no understanding of clinician-inflicted trauma & may perceive us as dramatic or paranoid after that. ⚡️ #NEISvoid #MedSky

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Brianne Benness @bennessb.bsky.social · 01/08/2025

what have been your favorite chronic illness & disability books from the last 3-5 years? (I’m playing cultural catchup since my last crash!) reposts also appreciated :)

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