To be expected with a chronic infection. It is chronic.

Shame on everyone who put petty political grandstanding over lives. This ban will worsen community health and increase risk of #LongCOVID. CDC Director: actions have consequences. When you release statements minimizing the seriousness of COVID-19, this is what gets emboldened.

Imagine if doctors actually believed all patients. “Oh you’re feeling like you’re dying? Let’s run tests immediately”. “Oh your back kills? Let me examine, run tests, refer”. “Oh you need some supports? I’ll help write a letter.” Just imagine.

“There’s a misconception that you get free things or have it easy when you’re disabled or chronically ill. In reality, you have to fight for supports and services. I’ve spent 20yrs begging for help to survive and it’s humiliating.” -Patient with disability

A groundbreaking study in WA found 9 out of 10 children in prison had a severe brain impairment. Most were undiagnosed. The Disability Royal Commission exposed this too. Its report said the criminalisation of disability is a hidden national crisis. abc.net.au/news/2018-02-1…

“Most people don’t know that to receive government supports for disability you need to be disabled enough to qualify but well enough to handle the complex forms and assessments. Many are too disabled to even apply.” -Patient #DisabilityRights

IT'S OFFICIAL: The mask ban in Nassau County, NY is now law & takes effect immediately. It gives police power to jail people wearing a mask & fine them $1,000. The bill includes health & religious exceptions, but the broad language means anyone wearing a mask could be arrested.

This is why supporting free healthcare is suicide prevention. Supporting free housing is suicide prevention. Supporting universal basic income is suicide prevention. Supporting all forms of social safety nets is suicide prevention.

In Australia an NDIS bill was just rushed through parliament which will cut $14.2billion dollars of supports from disabled people. @billshortenmp will try to convince you this is a good thing but it isn’t. Cutting supports to those in need is a low act

If you’re on a waitlist in Australia for a specialist and you’re struggling, call the clinic, explain your limited function/symptom severity and beg to be put on the “cancellation waitlist”. It’s likely you’ll get offered a sooner appointment

Tips to combat medical gaslighting: 1. Before an appointment, write down clear and concise points to read out if you need (this avoids forgetting anything). 2. Take someone with you if you can-you’re more likely to be believed if you’re with a second person

The “dole bludger” stereotype is a disabled person who doesn’t work and just relaxes, taking advantage of government financial support. In reality, they’re spending all day managing their health, attending apts & completing medical admin, just to survive

I'm not on here much these days. My health is extremely poor & I save everything I've got left for my family lately. But this is my #LongCOVID story. I hope it helps someone feel less alone on this nightmare journey ❤️

It’s still breaking them. Right now. “It’s clear by now that SARS-CoV-2 is not just a respiratory virus, but also one that can affect organs throughout the body—including the brain.” time.com/7021575/covid-…

Organising a night out is exhausting work for young people with disabilities like Alessa — from checking the terrain, doorways, entrances, and adequate space for a wheelchair. ab.co/4eshhvr

How did it come to this? People commenting that preparing for medical appointments feels like preparing for a trial. Preparing evidence, hoping to convince the jury! People even stop going to appts because it’s just too stressful.

“A new study reveals that people who had two COVID-19 infections were more than twice as likely—and those who had three or more COVID-19 infections were almost four times more likely—to report #LongCovid as those with one infection.”

Ok so I was waiting for a bus to get work. Talking to this elderly gentleman who I know in passing. I looked at my phone for a second and the gentleman fell over, obviously went to help and then he started to have a fit. I called for help, phoned an ambulance, do you know how

At ER with a POTS flare - heart rate is 180 at triage. Nurse: “Are you fighting with your boyfriend sweetie?” Me (somewhat indignant) “I don’t have a boyfriend. I have POTS” Doctor: “Single? At your age? How come? You don’t want to be married?” 🧵/1

Emotional read this morning. Thank you George Monbiot for shining a light on the 'most remarkable situation I've ever encountered in either medicine or journalism'. #ME #LongCovid