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 · 31/08/2026

Aw that was nice of him, sounds like a good one 😊

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

"I don't think my alternator's charging the battery anymore" "You can't use words like "alternator", only mechanics can understand what those are and how they work."

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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

There are thousands of people like me, in exactly the same position. ADDRESS THE #NDIS FRAUD COMMITTED BY PROVIDERS!!

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

Providers who have built Graded Exercise Therapy clinics and make money off them are also the ones who claim to be the experts on ME/CFS. They inform the #NDIA which treatments are best. I haven't been able to access the #NDIS because I can't do something that will cause me to become worse.

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

I have a disabling condition called #MECFS. In Australia, the treatment that is recommended for this condition - Graded Exercise Therapy - is something that is scientifically KNOWN to make the condition worse.

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

NDIS cuts that penalise #disabled people also restrict our ability to add our valuable contributions. They cost our country. Penalise providers, not participants. They're the ones committing the fraud.

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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 · 03/07/2026

Exactly right. This fear for themselves and protecting their own ego - the narcissism behind it - causes so much unnecessary suffering for so many people when we are at our most vulnerable.

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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

And look who's in the room: a patient the common diagnoses already failed to explain. Test those patients properly and > 1 in 4 turn out to have a #RareDisease. That's not a long shot. A doctor who won't investigate past "it's rare" has pre-committed to misdiagnosing the hardest patients he sees.

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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 · 01/07/2026

I used to play Duolingo. I felt like I was at least still learning something while spending so many hours on it and it didn't feel hard for my brain foggy brain because there was so much repetition. Often I'd skip the speaking exercises. 💜

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Patients with Power @ptswithpower.com · 30/03/2026

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

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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 · 27/01/2026

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.

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

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

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

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.

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

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

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

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

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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 · 16/01/2026

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."

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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 · 28/12/2025

(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 💜)

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Patients with Power @ptswithpower.com · 28/12/2025

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. 🌻

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Patients with Power @ptswithpower.com · 28/12/2025

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

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Patients with Power @ptswithpower.com · 28/12/2025

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"

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Patients with Power @ptswithpower.com · 26/12/2025

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

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Patients with Power @ptswithpower.com · 26/12/2025

Oh, here's a wild one: - other healthcare workers

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Patients with Power @ptswithpower.com · 26/12/2025

Great additions, thank you 💜

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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 · 19/12/2025

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.

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Patients with Power @ptswithpower.com · 19/12/2025

I really feel you on this. 💜 Tried shaking the stick, arm got too sore. I'm tired too, and so disillusioned and disgusted at healthcare.

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Patients with Power @ptswithpower.com · 15/12/2025

They sighed and said they'd have to fit me in. Then the person doing the ultrasound rushed through it and it was like she didn't try at all. She said that all the problem things I was getting the scan to check on had 'gone away' but I think it was more that she just wanted me to go away.

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Patients with Power @ptswithpower.com · 15/12/2025

Wow that is awful. I'm sorry that happened to you. I once showed up for a scan which I'd changed the date of on the phone. The receptionist must not have recorded it properly because when I arrived, they said they had no record of my appointment and treated me as if I was deliberately making it up

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Patients with Power @ptswithpower.com · 06/12/2025

After asking to finish speaking, he suddenly refused to examine me and wrote a referral that would not be taken seriously by anyone. "She worries she has cancer" - but didn't include any of the red flag symptoms or signs. He tried to not let me see the referral and then he refused to change it.

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Patients with Power @ptswithpower.com · 06/12/2025

Here's the most recent retaliation: I needed an urgent biopsy. My GP was away so I had to see a random. I wrote a few sentences beforehand to read out to describe symptoms etc. He interrupted me before I could finish, and I just asked for him to let me finish.

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Patients with Power @ptswithpower.com · 06/12/2025

Wow that's so bad. My endo suddenly became uncontactable after he'd given me the wrong prescription. I have adrenal insufficiency and could have died from the medication suddenly disappearing. I think it was the pharmacy that saved me, can't remember - I got really sick. I just know it wasn't him.

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