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There are thousands of people like me, in exactly the same position. ADDRESS THE #NDIS FRAUD COMMITTED BY PROVIDERS!!

Providers who have built Graded Exercise Therapy clinics and make money off them are also the ones who claim to be the experts on ME/CFS. They inform the #NDIA which treatments are best. I haven't been able to access the #NDIS because I can't do something that will cause me to become worse.

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.

NDIS cuts that penalise #disabled people also restrict our ability to add our valuable contributions. They cost our country. Penalise providers, not participants. They're the ones committing the fraud.

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.

Exactly right. This fear for themselves and protecting their own ego - the narcissism behind it - causes so much unnecessary suffering for so many people when we are at our most vulnerable.

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

And look who's in the room: a patient the common diagnoses already failed to explain. Test those patients properly and > 1 in 4 turn out to have a #RareDisease. That's not a long shot. A doctor who won't investigate past "it's rare" has pre-committed to misdiagnosing the hardest patients he sees.

🩺 "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 💜

I used to play Duolingo. I felt like I was at least still learning something while spending so many hours on it and it didn't feel hard for my brain foggy brain because there was so much repetition. Often I'd skip the speaking exercises. 💜

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

Isn't it wild? It's as if all the symptoms you came in with just disappeared💨 as soon as your blood test came back normal

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

Oops hashtag fail 😅

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

Me too, I feel you. 🫂🤝🩵

Yeah this is such a tricky problem. My thinking has been to try to grow on social media and 'spread the word' for us to unite and organise, share my ideas and a plan, but every time I get established on a platform, the platform goes to shit - it's like sand slipping beneath my feet.

If we unite as patients and start to recognise the patterns in how we’re treated -or mistreated- in healthcare, we get stronger. There’s strength in numbers, and we’ve got numbers. #NEISvoid