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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 · 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 · 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 · 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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Patients with Power @ptswithpower.com · 03/12/2025

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.

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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 · 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

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.

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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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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 · 20/07/2025

#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

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Patients with Power @ptswithpower.com · 07/07/2025

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

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Patients with Power @ptswithpower.com · 04/07/2025

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.

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Patients with Power @ptswithpower.com · 03/07/2025

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."

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Patients with Power @ptswithpower.com · 19/06/2025

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.

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Patients with Power @ptswithpower.com · 19/06/2025

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.

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

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

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Patients with Power @ptswithpower.com · 11/06/2025

A quick ME/CFS explainer for your medical folder. #pwME

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Patients with Power @ptswithpower.com · 09/06/2025

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.'

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

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.

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

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."

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Patients with Power @ptswithpower.com · 27/05/2025

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."

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Patients with Power @ptswithpower.com · 01/04/2025

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."

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Patients with Power @ptswithpower.com · 27/03/2025

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"

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Patients with Power @ptswithpower.com · 16/02/2025

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

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Patients with Power @ptswithpower.com · 16/02/2025

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.

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Patients with Power @ptswithpower.com · 11/02/2025

So wait, UnitedHealthcare was using an AI to approve or deny health insurance claims, and that AI had a 90% error rate. NINETY PERCENT? Sounds like an AI programmed to deny, finding whatever reason it can, no matter how dodgy. cdn.arstechnica.net/wp-content/u... #PatientRights #NEISvoid

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."

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

I did also make this patient-eject-button keyboard I suspect a lot of doctors may have behind their desks, just for when they come across someone whose symptoms aren't quick and easy, and they want to get rid of us. 😆😖 #medicalgaslighting #chronicillness

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.

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Patients with Power @ptswithpower.com · 03/02/2025

I made this at one point, and then thought maybe I went a bit far... 🤭 #neisvoid #invisibleillness #medicaltrauma

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."

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Patients with Power @ptswithpower.com · 29/01/2025

A concerned letter to the senate about the nomination of Robert F Kennedy Jr for US Secretary for Health and Human Services, from his cousin Caroline Kennedy. 📄 Here’s a couple of quotes🧵 #neisvoid #health

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

From previous image:

“Of course, people can grow and change. Through his own strength - and the many second chances he was given by people who felt sorry for the boy who had lost his father - Bobby was able to pull himself out of illness and disease. I admire the discipline that took and the continuing commitment it requires.”

This image is the second page of the letter, which reads:

“But siblings and cousins who Bobby encouraged down the path of substance abuse suffered addiction, illness, and death while Bobby has gone on to misrepresent, lie, and cheat his way through life. Today, while he may encourage a younger generation to attend AA meetings, Bobby is addicted to attention and power. Bobby preys on the desperation of parents of sick children - vaccinating his own children while building a following by hypocritically discouraging other parents from vaccinating theirs. Even before he fills this job, his constant denigration of our health care system and the conspiratorial half-truths he has told about vaccines, including in connection with Samoa's deadly 2019 measles outbreak, have cost lives.

And now we know that Bobby's crusade against vaccination has benefited him in other ways, too. His ethics report makes clear that he will keep his financial stake in a lawsuit against an HPV vaccine. In other words, he is willing to enrich himself by denying access to a vaccine that can prevent almost all forms of cervical cancer and which has been safely administered to millions of boys and girls. During my time in Australia working on the QUAD Cancer Moonshot, I learned that cervical cancer is among the top three forms of cancer among women in a majority of countries.

Tragically every year, more than 200,000 children lose their mothers, orphaned due to lack of vaccines and screening. Those are the real-world consequences of Bobby's irresponsible beliefs.”

(Character limit reached, cont. in comments)

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Patients with Power @ptswithpower.com · 25/01/2025

This is concerning. I mean, everything that’s going on in the US right now is, and of course it’s going to affect medical research, but you know. Here it is, happening. ~ Article link: www.science.org/content/arti... #NEISvoid #NIH #ChronicIllness #Science #MedSky #Research

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.

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Patients with Power @ptswithpower.com · 24/01/2025

And as a person who once worked very hard conducting experiments & publishing research in cognitive neuroscience, this just personally offends me every time. How can you say your practice of medicine is evidence-based, when you refuse to look at the evidence? #neisvoid #medsky

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.

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Patients with Power @ptswithpower.com · 18/01/2025

I have a close friend who’s been disabled 5 years, just had a surgery, and is now back to normal (🎉) I recently broke up with my long-term bf and she’s just sent me this. Ideas for how to kindly & succinctly explain how wrong (and offensive) it is? #NEISvoid

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.”

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Patients with Power @ptswithpower.com · 11/01/2025

Docs, This comic shows how your #MECFS patients can seem okay in appointments, but actually be very much impaired. It also shows how going in for appts can make us sicker. (This person is just mild / moderate - for some it’s impossible.) How come docs don’t do house calls anymore? #MedSky #NEISvoid

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Patients with Power @ptswithpower.com · 18/12/2024

It also suggests that hEDS & HSD may not be separate conditions, but rather one condition with a wide range of symptom outcomes. And that extra-cellular matrix degradation might play a central role in the disease progression.

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."

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Patients with Power @ptswithpower.com · 18/12/2024

If you have #hEDS / #HSD, check this out: Specific fragments from the matrix that surrounds and supports the cells in our body - the extra-cellular matrix - have been found in the blood of people with hEDS and HSD. They weren’t seen in healthy people. 🧵

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."

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Patients with Power @ptswithpower.com · 03/12/2024

I’m trying to increase my body water percentage. My scale always says it’s 38-39%, and gives me a warning that it’s too low. I drink no sugar gatorade ALL day. Friends with #POTS, how do you get the water to stay in your body?? (I tried salt tablets but had a weird reaction to them.)

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Patients with Power @ptswithpower.com · 29/11/2024

A comic showing the difference between energy and exertion in a healthy person and someone with ME/CFS. By Laura’s Pen: laurachamberlain.co.uk/2016/05/12/t... #pwme #mecfs

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

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Patients with Power @ptswithpower.com · 25/11/2024

But after a very long painful year, I finished it. Since then, that document has saved me so many times. And it got me referrals to specialists in the areas I needed - finally. That wasn’t where the medical trauma ended though. Actually, it was more like where it began.

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

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Patients with Power @ptswithpower.com · 25/11/2024

Even this wasn’t enough to get them to listen though. So I spent the next year writing a document with research-backed evidence for the conditions I’d found I had, to prove them to my doctors, just to be able to access healthcare. It took a year because using my computer was sickeningly painful.

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

A photo a dark-haired light-skinned girl (me), lying in bed with computer strapped to a cushion on top of me. Another strap holds my arm up onto the keyboard.

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Patients with Power @ptswithpower.com · 25/11/2024

When I got so sick I couldn’t go to work anymore, doctors *still* said nothing was wrong. They barely listened to my symptoms nor asked any questions, and would just run the same tests that had already come back negative time and time again. (And charge me for it.)

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Patients with Power @ptswithpower.com · 25/11/2024

It’s easy to fall through the cracks in healthcare when they’re an absolutely gaping hole. 🧵 #MedSky #NEISvoid

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

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Patients with Power @ptswithpower.com · 22/11/2024

Some people get ME/CFS after a virus, but in others it develops gradually without a known trigger. The symptoms can range from mild to severe, it’s often highly disabling, and it is not rare. The exact causal mechanisms haven't been nailed down yet, but research is getting closer.

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Patients with Power @ptswithpower.com · 22/11/2024

According to current research, #MyalgicEncephalomyelitis (ME/CFS), otherwise known as "Chronic Fatigue Syndrome," is a neuro-immune condition with fluctuating physical and cognitive symptoms.

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.

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Patients with Power @ptswithpower.com · 14/11/2024

#MedicalGaslighting design by artist GiO2 on Redbubble: www.redbubble.com/i/sticker/Al...

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Patients with Power @ptswithpower.com · 14/11/2024

Comic by Janice Goldberg, 'Medical Gaslighting' www.graphicmedicine.org/spotlight-me... #MedicalGaslighting

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