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ptswithpower.com
Patients with Power
@ptswithpower.com
2.5K followers 2.2K following 870 posts
Patient-scientist fighting for medicine based on SCIENCE; NOT BIAS. Taking a stand against patient abuse, neglect & exploitation. 🦾 Studying doctor behaviour 🧐

⚡EDS, ME/CFS certified. (BPsych Hons & other less significant credentials too)
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ptswithpower.com
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
A framed image with text that reads "If you can control a person's suffering, yOU have immense power over them." There is a quote from George Orwell's book 1984, which reads: How does one man assert his power over another, Winston?' Winston thought. 'By making him suffer,' he said. There is a Patients with Power logo in the corner, where the Ps look like lightning bolts, and the handle @ptswithpower is written below.
December 4, 2025 at 1:34 AM
ptswithpower.com
Wow yeah, this really speaks to the power imbalance between you as a patient and that nurse. You're literally at her mercy.

There's a quote I always think of when it comes to clinicians and the power they have over us.
A framed image with text that reads "If you can control a person's suffering, yOU have immense power over them." There is a quote from George Orwell's book 1984, which reads: How does one man assert his power over another, Winston?' Winston thought. 'By making him suffer,' he said. There is a Patients with Power logo in the corner, where the Ps look like lightning bolts, and the handle @ptswithpower is written below.
December 3, 2025 at 11:52 PM
ptswithpower.com
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.
November 10, 2025 at 5:00 AM
ptswithpower.com
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.
September 29, 2025 at 12:33 AM
ptswithpower.com
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.
September 21, 2025 at 2:40 PM
ptswithpower.com
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."
September 5, 2025 at 4:30 AM
ptswithpower.com
So, instead of “Doctors don’t have the time to treat patients thoroughly,” let’s ask: “What are doctors doing to make sure they do have the time?

Because if doctors don't fix this,
who will?

/end #NEISvoid #MedSky
An image which reads the same as the post. There's a red cross next to "doctors don't have the time to treat patients thoroughly" and three purple ticks next to "what are doctors doing to make sure they do have the time? How are they standing up to the system? How are they standing up for their patient's needs?" At the bottom the sentence appears in larger text and bold: "Because if doctors don't who will?" The sentence is highlighted in red and there's a white arrow in the grey background that points to it. (This may sound like overkill, but it works. 😅) The handle @PtsWithPower is visible in the top right corner.
September 1, 2025 at 3:29 AM
ptswithpower.com
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."
September 1, 2025 at 3:24 AM
ptswithpower.com
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.
August 10, 2025 at 1:28 AM
ptswithpower.com
#MedicalGaslighting sounds like:

Doctor: Okay I've looked at all of your tests, and they're all... normal

Patient: But I'm still in pain.

Doctor: Your body is fine. Your mind is playing tricks on you
July 20, 2025 at 12:32 AM
ptswithpower.com
This is #MedicalGaslighting.
"I cried in the parking lot after the ER doctor sent me home. Not because I was being dramatic, but because I knew something was wrong but no one was listening."

⚡️ vt.tiktok.com/ZSBUpFHVu/ #NEISvoid #MedSky #DisabilityRights
July 7, 2025 at 2:54 AM
ptswithpower.com
Everyone deserves hospital care.
But right now, people with #SevereME are locked out.

We need care spaces that don’t harm the people they’re meant to help.
Dark. Quiet. Temperature-controlled. Stimulus-limited.

Because care isn’t care when it excludes the most vulnerable.

#DisabilityRights #pwME
A screenshot from Australia's disability discrimination act, which reads: Goods, services and facilities It is unlawful for a person who, whether for payment or not, provides goods or services, or makes facilities available, to discriminate against another person on the ground of the other person's disability: (a) by refusing to provide the other person with those goods or services or to make those facilities available to the other person; or (b) in the terms or conditions on which the first-mentioned person provides the other person with those goods or services or makes those facilities available to the other person; or (c) in the manner in which the first-mentioned person provides the other person with those goods or services or makes those facilities available to the other person.
July 4, 2025 at 4:06 AM
ptswithpower.com
Caring for a patient requires both patient and doctor...
wait -
🎤️ is this thing on?
Alright, for those in the back:

Caring for a patient requires both patient AND DOCTOR to recognise and respect the other's area of expertise.

📑Kennedy (2003)
⚡️#MedSky #NEISvoid #eds #mecfs #pots
A screenshot from the linked article which reads: "This is the context in which the question of who is the best judge of a patient's interests began to be canvassed as a question that should be asked and that required an answer. The emerging answer was that caring for a patient requires both parties to recognise and respect the other's area of expertise. The doctor knows what the operation on the ankle involves and what the likely physical consequences will be. The patient will know what it feels like to face the prospect of a limp or of never dancing or playing football again. Together they can pool their knowledge and choose the way forward. The language of partnership becomes the currency—not a swing of the pendulum from doctor power to patient power but a relationship of interactive partnership."
July 3, 2025 at 12:06 AM
ptswithpower.com
Australia, how long will you continue to block some of the most severely #disabled people in the country from being able to access the #NDIS because we haven't tried a therapy that's KNOWN to cause us harm?

(How can you not see the class action coming??)

theconversation.com/its-not-just...
A screenshot from the linked article. There are passages highlighted. The first sentence is altered: Graded exercise therapy can encourage people to push beyond their "energy envelope" which means they do more than their body can manage. (The words "can encourage" are crossed out and written over them is "involves encouraging") The rest of the text reads: This can trigger post-exertional malaise and a worsening of symptoms. In June 2024, the Australian government announced A$1.1 million towards developing new clinical guidelines for diagnosing and managing ME/CFS. Leading organisations have scrapped the recommendation of graded exercise therapy in the United States (in 2015) and the United Kingdom (in 2021). Hopefully Australia will follow suit. What can people with ME/CFS do? While we wait for updated clinical guidelines, "pacing" - or working within your energy envelope - has shown some success in managing symptoms. This means monitoring and limiting how much energy you expend. Some evidence also suggests people who rest in the early stages of their initial illness often experience better long-term outcomes with ME/CFS.
June 19, 2025 at 10:22 AM
ptswithpower.com
Some #MedicalGaslighting red flags to look out for. 🚩

Q: What are some other signs your doctor might be gaslighting you?

⚡️ #NEISvoid #ChronicLife www.health.harvard.edu/staying-heal...
A screenshot from the linked article. The text reads: Tips to spot medical gaslighting Sometimes it's hard to catch medical gaslighting as it's happening, especially if the clinician's behavior is subtle or if you're feeling sick or stressed. Red flags can include a health care provider who doesn't listen or interrupts you diminishes your symptoms blames your symptoms on your age, gender, weight, lifestyle habits, or sexual orientation says your symptoms probably are due to anxiety, depression, or stress rushes you through an appointment. A classic example is a 70-year-old who is worried about having more than usual body aches and low energy, whose clinician says that it's probably just aging, without ordering any tests.
June 19, 2025 at 7:28 AM
ptswithpower.com
Reminder to those of us with #hEDS:
You can add this paper to your medical folder to ward off ignorant physicians who argue that hEDS is unlike other forms of EDS because the gene hasn't been found and it's therefore a bit more "all in your head."

⚡️ #NEISvoid www.researchsquare.com/article/rs-4...
A screenshot of the title of the article which reads: Research Article Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome Cortney Gensemer, Tyler Beck, Lilong Guo, Taylor Petrucci, Jordan Morningstar, and 51 more A screenshot of the abstract of the article. A highlighted part of the text reads: These findings support Kallikrein gene variants in the pathogenesis of hEDS The entire text reads: Abstract Hypermobile Ehlers-Danlos syndrome (hEDS) is a common heritable connective tissue disorder that lacks a known genetic etiology. To identify genetic contributions to hEDS, whole exome sequencing was performed on families and a cohort of sporadic hEDS patients. A missense variant in Kallikrein-15 (KLK15 p. Gly226Asp), segregated with disease in two families and genetic burden analyses of 197 sporadic hEDS patients revealed enrichment of variants within the Kallikrein gene family. To validate pathogenicity, the variant identified in familial studies was used to generate knock-in mice. Consistent with our clinical cohort, KIK 156224D/+ mice displayed structural and functional connective tissue defects within multiple organ systems. These findings support Kallikrein gene variants in the pathogenesis of hEDS and represent an important step towards earlier diagnosis and better clinical outcomes. Subject tags at the bottom of the article: Medical Genetics Hypermobile Ehlers Danlos Syndrome hEDS
June 12, 2025 at 12:51 AM
ptswithpower.com
A quick ME/CFS explainer for your medical folder. #pwME
June 11, 2025 at 9:39 PM
ptswithpower.com
Alba is one of the #disabled people whose stories are told in the article above. ⬆️

Can you imagine the trauma she'd be experiencing, being back in a detention centre after the abuse she went through at the hands of doctors last time?

Non-consensual gynaecological procedures!
⚡️ #MedicalAbuse
A screenshot from an article. The text reads: '"She became a key witness and survivor to non-consensual procedures being committed by a doctor, including non-consensual gynecological procedures, against women in the Irwin County Detention Center in Georgia (ICDC), which was investigated and condemned by the U.S. Senate and which has since closed." Alma spent nearly three years of her life being detained without due process. Separated from her family, abused at the hands of detention centre employees and denied basic human decency. Yet when she was released, she became an advocate. She used her real name. She stood up for injustice. She fought to protect others. Whistleblowers like Alma should be protected, but as we know the current Regime targets anyone they see as a political threat or rival. ICE has taken Alma again. She was complying with all conditions of her original release, yet when she showed up at the ICE Atlanta Field Office for her regular check-in, she was separated from her family and thrown back into custody.'
June 9, 2025 at 12:19 AM
ptswithpower.com
Docs,
Look for one diagnosis (or a few related ones) that explain all your patient's symptoms - don't assume a dozen things all went wrong at once by chance.
⚡️ #MedTwitter #ChronicIllness
A purple graphic which reads: "Parsimony. If the symptoms started together, they likely belong together. It's not coincidence. It's a clue." There is a yellow gradient highlighting the words "it's a clue" as if a lamp is shining on them. My @PtsWithPower handle appears in the bottom.
June 8, 2025 at 4:07 AM
ptswithpower.com
This pilot study testing a medication for #MECFS had some exciting results. Many participants found that their PEM, #POTS and fatigue improved, amongst other symptoms. This was particularly true for people with post-viral MECFS. Looking forward to seeing results from the next stage of this research.
A screenshot of a pre-print of a study. The text reads "Rapamycin recovers ME/CFS patients (N=40) from physical and mental fatigue symptoms. Several lines of this manuscript demonstrate that rapamycin treatment effectively ameliorated fatigue-related symptoms in ME/CFS subjects. First, BAS analysis revealed a strong and significant improvement in daily physical activity in all participants from the BSL to T3 stages. Second, symptom analysis from the SSS inventory indicated a strong and significant recovery in overall fatigue, disturbed sleep, post-exertional malaise, and orthostatic intolerance among ME/CFS patients. Third, evaluations of different fatigue parameters of MFI also revealed a significant restoration of health deficits, such as general fatigue, reduced motivation, physical fatigue, mental fatigue, and reduced activity. Finally, the SF-36 score analysis revealed a strong recovery of social functioning and physical and emotional health. Our analysis was unbiased, based on age, sex, body weight, and disease duration. The effect of rapamycin on the overall metabolism of sugars, lipids, and cholesterol was monitored in all patients during each milestone." Another screenshot from the study. The text reads: "Taken together, our pilot study demonstrated that low-dose rapamycin (6 mg/week) significantly ameliorated the clinical symptoms of fatigue and was well-tolerated in this relatively large ME/CFS cohort. Importantly, these findings support a mechanistic role of mTOR suppression in the restoration of autophagy. Rapamycin treatment is associated with a marked reduction in pSer258-ATG13, a key indicator of impaired autophagy. This reduction was correlated with an increase in BECLIN-1 expression, consistent with enhanced autophagy flux."
June 6, 2025 at 12:28 PM
ptswithpower.com
Oh, how did I forget the one that sparked this thread?

✨Celebrities are now speaking out about it too✨

Greater awareness means
✨Now people know they weren't just unlucky to get a run of bad docs. And it wasn't anything they said or didn't say. It's #MedicalGaslighting and it happens all the time.✨
A screenshot from the quoted article from the first post. There is a picture of a girl in her 20s sitting cross legged on a hospital bed smiling at the camera and giving a thumbs up. She's wearing an oxygen concentrator and a blood pressure machine is still connected to her arm. Text around the image reads: "I KNOW how high my risk is and they do too. They always did. But not one doctor f***ing listened to me. Not one doctor took me seriously. Not one doctor did the scans or blood tests I begged for whilst crying on the floor in agony. Instead, they dismissed me. They gaslit me, told me it was nothing, made me feel like I was overreacting. They refused to scan me. They refused to investigate. They REFUSED to listen. One even told me that it's 'all in my head.' And now? Now the cancer has spread."
May 27, 2025 at 12:45 AM
ptswithpower.com
When you finally find a doctor who listens and treats you with respect, but then they ask about previous appointments, it's a real rock and a hard place situation.
🧵
#NEISvoid #eds #pots #mecfs
A meme of a sheep sitting on a rock that is jammed between two cliff faces, suspended in the air. On the side of one of the cliff faces, text reads "Make it sound better than it was and unable to explain things". On the rock suspended in the air text reads "Tell the truth and not be believed". In a speech bubble the sheep says "This is fine. I'm fine."
April 1, 2025 at 8:11 PM
ptswithpower.com
Here's the link: www.washingtonpost.com/politics/202...
A screenshot of a Washington press article which reads "Politics
Social Security backs off plan to cut phone services for disabled people
But millions applying for retirement or survivor benefits will no longer be allowed to verify their identity by phone and will need to do so online or in person. By Lisa Rein and Hannah Natanson"
March 27, 2025 at 1:31 AM
ptswithpower.com
Could you explain this concept to me? Your blog says that a doctor can & should discharge a patient if the patient repeatedly shares confidential information about themselves. Doesn't the patient choose whether they want to share their own information? In which situations does this apply?
#neisvoid
A screenshot of a webpage. There's an 'Indigo' logo in the header and text that reads: Breach of Confidence A breach of confidentiality can also result in patient discharge. Maintaining patient privacy is a fundamental ethical principle in healthcare. If a patient repeatedly violates this principle by (highlight begins) sharing confidential information about themselves (highlight ends) or others without consent, it can undermine trust and compromise the patient-provider relationship. In such cases, (another highlight begins) the medical professional may have no choice but to discharge the patient (highlight ends) to protect the privacy and confidentiality of all parties involved.
February 16, 2025 at 11:27 PM
ptswithpower.com
I've had so many experiences like these in Australian healthcare. Both private and public; having a #ChronicIllness myself, caring for my dad, and looking out for close friends. It's been #MedicalGaslighting and abuse of power, just over & over & over.
⚡️
www.news.com.au/lifestyle/he... #NEISvoid
I screenshot of text from an article which reads: "Well," she said, tongue tinged with steel. "It must be your weight then." The words hit me like a freight train. I'd always believed that if I was unwell, doctors would help me. A modeling photo of a woman dressed in pink with pink hair and a pink background. She is posed and leaning on a cane. I screenshot of text from an article which reads: "My private neurologist had to send a letter to St Vincents to tell them I was not malingering or faking, and to give me the V fluids so I wouldn't die," they said. "The doctor whispered into my ear that day 'no NG tube, no IV fluids', , because he believed he would be 'reinforcing my behaviours' ... I hadn't been able to eat anything orally in two days. And they were just going to leave me there. A selfie of a woman smiling at the camera and lifting her shirt to review her tube port.
February 16, 2025 at 12:41 AM