Patients with Power

The condition causing your symptoms determines your risk of being gaslit by your doctor. So does your gender, age, and whether you have a mental health condition.

Denis - The COVID Info Guy@thecovidinfoguy.bsky.social

"The hidden harms of medical gaslighting" Fibromyalgia, Long COVID, endometriosis, chronic fatigue syndrome and autoimmune disorders put patients at higher risk of “medical gaslighting,” where genuine clinical concerns are dismissed or invalidated without proper medical evaluation.

And it's wild that statements like this seem so obvious they barely feel like they bear repeating when you have a chronic illness, but to healthy people they seem barely possible. #ChronicIllness #MedicalGaslighting

Oh I would really like to read this.

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1 Sept

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

28 Aug

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

28 Aug

"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."

5 July

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.

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.

5 July

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

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.

5 July

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.

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

🩺 "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

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.

Idea for low energy day #mecfs 💜

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5 June

I was just trying to survive #NEISvoid

threads.comPatents With Power (@ptswithpower) • Threads, Say more305 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...

2 Apr

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

23 Mar

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

25 Feb

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

26 Jan

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

Patients with Power@ptswithpower.com

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

26 Jan

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

25 Jan

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

13 Jan

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

12 Jan

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

Patients with Power reposted

Tom Kindlon

@tomkindlon.bsky.social

4 Jan

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

8 Jan

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

22 Dec 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

26 Dec 2025

- 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

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

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.

6 Dec 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.

4 Dec 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

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

I swapped to him after this with the last one: "My heart rate gets to 180 in the shower, should I be worried?" 👨🏼‍⚕️"It's only because your BP drops" "Actually my BP goes up too" 👨🏼‍⚕️"You shouldn't be measuring yourself when you're asymptomatic" *Treats me like a head case from them on

I explained to this cardio that in #hPOTS -the condition I was asking him to consider- your BP rises along with your heart rate when you stand. So then he suddenly decided I don't need that referral he was going to write me, to test for it. Refused to explain, just "I've decided you don't need it."

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

@knighthawk899.bsky.social

I've had a cardiologist dump me just for bringing in a journal article. (to try to show him there are more medication options for #POTS than the two he was saying)

Patients with Power reposted

KnightHawk🦅

Replying to @knighthawk899.bsky.social

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/

29 Nov 2025

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

29 Nov 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

18 Nov 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

18 Nov 2025

If the police can do it, why not doctors?

10 Nov 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