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.

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

Idea for low energy day #mecfs 💜

@jenniferholton7.bsky.social · last mo.

My sister has a notebook full of these sorts of things. She mostly makes up her own patterns, but there are patterns online you can look at for inspo if your brain is stalled.

I was just trying to survive #NEISvoid

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

Patents With Power (@ptswithpower) • Threads, Say more

305 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...

threads.com

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

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

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 · 6mo ago

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

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

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

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

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

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

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

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

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/

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

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

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

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

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

On #MedicalGaslighting

Restless Beehive@restlessbeehive.bsky.social · 11mo ago

which contradicts the first philosophy of medicine DO NO HARM. Which put patients at harm by telling them they have a mental problem they do not have. By denying them treatment for the medical problems they do have.

Art is great. You can use your art as a distraction and to feel good and to connect with others, but you can also use it as a weapon. And in these times where we can reach people's minds and hearts all over the world on social media, it's probably the best weapon we have.

Chloë Lum@compulsiveobserver.bsky.social · 11mo ago

I see people posting that getting involved in community and making art help us survive the awfulness and I do agree. Strongly. I just want to add that making nice food also helps. Feeling a nice lil’ happiness boost after making and eating some soup.

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

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

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

When a child dies from brain cancer or someone dies from the measles or gets polio, can they sue RFK Jr. and the regime for severe negligence and medical malpractice for taking away the scientific research and the vaccines? Serious question.

Philip Gourevitch@pgourevitch.bsky.social · 11mo ago

That Trump and Trumpism are fascist doesn’t explain the sheer vandalism of unleashing mass murdering mayhem via RFK to replace medical/scientific institutions of immense value and prestige with medieval peasant superstitions. That is a criminal madness facilitated by but above and beyond fascism.

The biopsychosocial model of medicine was meant to be holistic. Biology🩻 + psychology🧠 + social context🏘️ In theory: It's treating patients as whole human beings. In practice? It's weaponised against patients with conditions that doctors find "too hard". 🧵 #NEISvoid #MedEd