Patients with Power

@ptswithpower.com

3132 Followers 2926 Following

Patient-scientist fighting for medicine based in SCIENCE; NOT BIAS⚡Calling out harmful healthcare culture⚡Breaking down difficult doctor behaviour✍️🧐

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."

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.

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.

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.

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

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."

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.

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."

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.

Tiktok video of a patient talking to a doctor, the same person plays both parts. The video is by @Chris.Got.Chronic

Scrolling through screenshots from Lily Mae on TikTok. They tell the story of how she knew her port was infected but doctors dismissed her for months while she got sicker. In the end she refused to go back to emergency but her Mum made her because she was so sick. She had sepsis with septic nodules in her lungs and she would have died had her Mum not made her go back to emergency. She was only taken seriously right at the end. The infection is visible in the photos right from the start.

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.

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."

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.

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.

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 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.'

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.

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."

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."

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."

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"

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 screenshot from a court case filing which reads:
"PLAINTIFFS' CLASS ACTION COMPLAINT. Plaintiffs, the Estate of Gene B. Lokken and the Estate of Dale Henry Tetzloff ("Plaintiffs"), individually and on behalf of all others similarly situated (the "Class" or "Classes"), by and through their attorneys, bring this class action against Defendants UnitedHealth Group, Inc., UnitedHealthcare, Inc., naviHealth, Inc., and Does 1-50, inclusive (collectively, "Defendants" or "UnitedHealthcare") and allege as follows:

INTRODUCTION

1. This putative class action arises from Defendants' illegal deployment of
artificial intelligence (Al) in place of real medical professionals to wrongfully deny elderly patients care owed to them under Medicare Advantage Plans by overriding their treating physicians' determinations as to medically necessary care based on an Al model that Defendants know has a 90% error rate.

2. Despite the high error rate, Defendants continue to systemically deny claims
using their flawed Al model because they know that only a tiny minority of policyholders (roughly 0.2%)' will appeal denied claims, and the vast majority will either pay out-of-pocket costs or forgo the remainder of their prescribed post-acute care. Defendants bank on the patients' impaired conditions, lack of knowledge, and lack of resources to appeal the erroneous Al-powered decisions.

3. The fraudulent scheme affords Defendants a clear financial windfall in the
form of policy premiums without having to pay for promised care, while the elderly are prematurely kicked out of care facilities nationwide or forced to deplete family savings to continue receiving necessary medical care, all because an Al model 'disagrees' with their real live doctors' determinations.

4. Defendant UnitedHealth Group, Inc. is the nation's largest insurance
company. UnitedHealthcare, Inc., the insurance arm of UnitedHealth Group, Inc.,
provides health insurance plans for 52.9 million Americans."

A black keyboard with white text written over the keys. Every key has a statement on it that doctors commonly used to dismiss patients.
Front row keys say:
Its your mental illness
It's your weight
It's your anxiety
You look fine

Middle row keys say:
There's no other signs
Just happens for women sometimes
It's stress
*subtly mock patient until they go away*
Are you sure you haven't been using any substances?

Back row keys say:
You're too young to have that
it just happens when you age
It's the childhood trauma that you definitely experienced
You've had a lot of tests, haven't you?
Probably just your medication.

The "corporate needs you to find the difference" meme from the office. Two images are being presented: a white page with black curved text which says "physicians" and a white page with black curved text which says "psychopaths." Someone asks "Corporate needs you to find the difference between this picture and this picture." Pam (who has text labelling her "Invisible illness patient") responds "They're the same picture."

First page of the letter which reads:

“Dear Senators Crapo, Wyden, Cassidy and Sanders:

Throughout the past year, people have asked for my thoughts about my cousin, Robert Kennedy, Jr. and his presidential campaign.

I did not comment, not only because I was serving in a government position as United States Ambassador to Australia, but because I have never wanted to speak publicly about my family members and their challenges. We are a close generation of 28 cousins who have been through a lot together. We know how hard it has been, and we are always there for each other.

But now that Bobby has been nominated by President Trump to be Secretary of Health and Human Services, a position that would put him in charge of the health of the American people, I feel an obligation to speak out.

Overseeing the FDA, the NIH, the CDC, and Centers for Medicare and Medicaid Services - agencies that are charged with protecting the most vulnerable among us - is an enormous responsibility, and one that Bobby is unqualified to fill. He lacks any relevant government, financial, management, or medical experience. His views on vaccines are dangerous and willfully misinformed. These facts alone should be disqualifying. But he has personal qualities related to this position which, for me, pose even greater concern.

I have known Bobby my whole life; we grew up together. It's no surprise that he keeps birds of prey as pets because he himself is a predator. He has always been charismatic - able to attract others through the strength of his personality, willingness to take risks and break the rules. I watched his younger brothers and cousins follow him down the path of drug addiction. His basement, his garage, and his dorm room were the centers of the action where drugs were available, and he enjoyed showing off how he put baby chickens and mice in the blender to feed his hawks. It was often a perverse scene of despair and violence.”

Cont. next photo

Screenshot from an article in Science which reads:
The travel ban has left many researchers, especially younger scientists, bewildered, says a senior NIH scientist who asked to remain anonymous. Today, the scientist encountered one group of early-career researchers who were scheduled to attend and present at a distant conference next week-presentations that are now
impossible. "People are just at a loss because they also don't know what's coming next. I have never seen this level of confusion and concern in people that are extremely dedicated to their mission," the scientist says.

A screenshot of a study abstract which reads: “RESULTS:
A total of 62 participants from 23 countries provided details of their experiences. While some had received support and validation of their condition, many described a number of difficulties including a lack of awareness or knowledge about PSSD, not being listened to, receiving unsyr pathetic or inappropriate responses, and a refusal to engage with the published medical literature.” The last part, “a refusal to engage with the published medical literature” is highlighted.

Front cover page of a book titled let this radicalise you by Kelly Hayes and Mariame Kaba. The cover is bright orange and yellow, with the silhouettes of people with raised arms in blue.

Secret message for people with screen readers: Hello my friend 😊

Screenshot of a text message that reads:
“Being sick destroys relationship, you're not a whole person when you're disabled and relationship really require that whole person ON BOTH SIDES or something is getting neglected or destroyed in the process. I'm sorry you're going through that, you really do got this and there's so much potential and hope for the future.”

A screenshot from a journal article. Highlighted text reads: "Such a self-perpetuating cycle of degradation and inflammation could help establish and maintain the disease state in hEDS/HSD."

A screenshot of a figure from a journal article. The caption reads: "As illustrated in Figure 2, showing the different fragmentation patterns identified through WB in plasma samples from healthy donors and those affected with hEDS, HSD, OA, PSA, RA, CEDS, and VEDS, our analysis unveiled a shared fragment pattern for hEDS and HSD, while revealing distinct patterns for OA, PsA, and RA."

The title of the comic is “The ME Adventures: Energy and Exertion” by Laura’s Pen.

The first section is labeled “0 hours”
There is a woman sitting at a table with a cup of coffee. The caption says “This is Maddie, she has ME.” Next to that is a drawing of a woman also sitting at a table drinking coffee, and the caption says, “This is ‘Normal’ Nancy.” Below the drawings it says, “They have met for coffee. For Maddie this is a high energy activity. For Nancy this is low energy.”

Next section: “1 hour.” Maddie is on a bus. Caption: “Maddie goes home.” Next to that is a drawing of Nancy looking at a rack of clothes with the caption, “Nancy pops to the shops.” Under the drawings it says, “Maddie is exhausted. Nancy goes and gets some bits while she’s out.”

The next comic: “2 hours.” There is a drawing of Maddie with the caption, “Maddie rests in bed.” Next to that is a drawing of Nancy holding her purse with the caption, “Nancy goes home.” Under the drawings it says, “Maddie feels very ill and has to go to sleep. Nancy finishes shopping and decides to head home.”

The next section: “4 to 8 hours.” Maddie and Nancy are each watching TV. The caption says, “Maddie and Nancy both warm up a ready meal and watch TV. Maddie does this out of necessity. She has no energy to cook and struggles to follow the TV. Nancy does this out of choice because she wants to relax.”

The next section: “16 to 20 hours.” There is a drawing of Maddie in bed looking tired. The caption says “Maddie wakes up.” Next to that is a drawing of Nancy brushing her teeth. The caption says, “Nancy gets up.” Below the drawings it says, “Maddie wakes up feeling as though she hasn’t slept (she has). Nancy feels a bit tired but perks up once she gets up.”

Out of room, continued in comments

A kayak on the river in the Grand Canyon. The image is shot from inside the canyon and the colours are dark.

A collage of photographs of pages from the document I wrote.

The sun rises over the Grand Canyon.

An image of the Grand Canyon. Text sitting on the ledge of the canyon reads “Healthcare.” Text lying inside the canyon reads “Chronic conditions”

A screen recording scrolling through research paper listings about myalgic encephalomyelitis.

The gloved hands of a scientist hold a microbiology reference book open, while another pair of gloved hands hold a microscope steady to look through. Image represents the biomedical research into chronic fatigue syndrome / myalgic encephalomyelitis.

A cartoon of a white male doctor, a white male patient and a black female patient. The doctor holds his stethoscope to the male patient's chest, while holding another to the female patient's head.