🐺 howling together 💕

Thank you @elizacharley.bsky.social for bringing this to my attention, @ellecarnitine.bsky.social for the ideas for what to recommend, and you all for pitching in to help protect Australian folks with ME, and potentially pwME all over the world!

4/4

Agreed - it was so important how data collection was repeatedly put forward to the Long Covid inquiry. But so many I know aren’t reporting if they get Covid, and are neither counted when they go on to develop damage and ongoing disease from it ❤️‍🩹

Also passionate about how disease contributes to other health & social issues in Australia - e.g. new onset or worsening domestic violence after a person contracts MECFS, Long Covid, or other chronic conditions; becoming unhoused; lack of access to public space in ongoing pandemic (clean air) & more

Thanks Maddy. Yes happy to chat & share. Right now in Australia we are still in a battle for the basics for MECFS - investment in research, investment in clinical education, completion of new treatment guidelines, investment in support for patients. Many patients not receiving healthcare.

📌

This 💯 I’m seeing way too many healthcare offerings say “it’s not graded exercise therapy. It’s a professional program tailored to the patients limits to establish a baseline then working with the patient on mutually negotiated goals to slowly increase their function” 👀 aka.. definition of GET

Thanks to @thesicktimes.bsky.social for publishing our op-ed on using humour & social media in advocacy

Authors of the op-ed (featuring a hilarious letter to the Jo(h)ns: @emilyesfraser.bsky.social @elizacharley.bsky.social, @diatoma.bsky.social @phillyphile215.bsky.social @katieklocksin.bsky.social

Thanks for sharing Billy!