Here is your friendly reminder to back up any social media data you might want to keep. I just got sent to Facebook death row. No warning, just bam locked out. Now waiting on my appeal, if unsuccessful my profile is gone. I was midway through typing a message too. So rude!

Exclusive | Speakers are boycotting the Bendigo Writers Festival after receiving a code of conduct from event organisers that required “compliance” with a controversial definition of antisemitism.

Stand up for disability care! SARRAH urges the Australian Government to reject harmful proposed pricing changes. Read more at the link below sarrah.au/NDIS #ndis #advocacy #disabilitycare #homecare #ruralandremote #rural #remote #medsky

Tomorrow I’ll reach the 190 week mark in my #NDIS home mods saga. It was meant to be a one week job finished 15/3/25. Will it be finished this week as promised? I can but hope.

I’m one of the lucky ones who had great drs in my corner and I could grasp what was needed from them so I got access. The process though (incl a rejection first time) made me a lot sicker. If it had been simple I’d have gotten access a year earlier and not gotten so severe which costs ndis more.

Neither the PM or the wannabe PM can say the name of our country. What other basic things can’t they manage? #auspol

The NDIA spent thirty-seven MILLION fighting disabled people & their families in court to stop us getting supports in 2023-2024. In 2019-2021 they apparently lost 76% of cases at the then AAT. So much for that 'waste clock' and demonising the disabled. www.righttoknow.org.au/request/ndia...

Scary, scary times in the USA.

BREAKING: The Household Pulse Survey, a key source of Long COVID prevalence data, was among the CDC pages taken down today following Trump's order to remove “gender ideology” references. More @thesicktimes.bsky.social: thesicktimes.org/2025/01/31/b...

Independent review of Music & Art therapy commissioned. Changes on hold. Reports in March. #NDIS www.ndis.gov.au/news/10530-i...

#PwME what is something you like to do for your well-being when you hit overwhelm with all the organising, managing & educating you now need to do because of your #mecfs #disability?

Professional bodies for music therapists and art therapists are reporting their services are no longer going to be allowed to be funded by #NDIS. These evidence based therapies can produce great results. E.g. music therapy can be great for language development. chng.it/4f9S9v5yMt

Wouldn’t be nice if #NDIS participants & nominees could charge for all our NDIS admin work and the education we find ourselves needing to provide to so called providers?

Tasmanian NDIS participant Adam Quarrell demanding apology over handling of his case "Hobart man Adam Quarrell was asked "can't you just hold it in" when discussing his need for catheters with an NDIS planner." ♿️ #disability #NDIS www.abc.net.au/news/2024-11...

OT co had details of my Dx and AT I needed, added me to waiting list. Then they contact me & confirm that ME/CFS is my “primary disability”. Result is I’m off the list. I can’t help but think it’s my Dx not lack of avail. of an OT who can prescribe grab rails that is the issue.Auto email kicker:

I have experienced so much patient blaming, “poke you 5 ways and give up” or being told that I’m faking or it’s psychosomatic. Doctors don’t take responsibility for figuring out what’s wrong or how to help. That’s up to me apparently. And that’s not just with ME/CFS but with other conditions too.

My dog absolutely loves going to the vet. Here she is in the consulting room waiting for the vet to come in. Every passing shadow gets her tail wagging. If I got lots of treats every time I went to the doctor maybe I might feel the same way?

I think I’ve reached the age where all policemen look too young. Why is someone with less than 4 years experience in the job able to be considered a “Senior Occupational Therapist”? It’s my 3rd OT in a row with 4yrs or less experience. Did all the experienced ones leave the profession? #ndis

And that's all, folks. Chick #3 made an exciting exit dragged off with a parent. Fare thee well. #367Collins #PeregrineFalcons2024

🗣️The federal Health Minister Mark Butler will speak at the Parliamentary Friends of #MECFS meeting 18th Nov 👩🏻‍💻 Pls join event via zoom to ⬆️ attendee numbers 🗳️ Politicians notice numbers 🛌Cameras can be off to allow resting Click on link to join zoom tinyurl.com/2zt7wbas

Wordle 1,247 2/6 🟨⬜🟨⬜🟩 🟩🟩🟩🟩🟩

Post a picture you took (no description) to bring some zen to the timeline

Humbled by all the kind people who’ve reached out to me asking how they can help us after the Asylum Seeker Resource Centre was robbed twice in past 48 hrs If you can manage a donation to help us cover the cost of what was stolen or damaged we’d be so grateful: donate.asrc.org.au/donatetoday

(New Zealand) 2-minute video piece plus text that is somewhat similar to a transcript "Dunedin researchers reveal strong link between #longCOVID & #chronicfatiguesyndrome" www.newshub.co.nz/home/new-zea... #MEcfs #CFS #PwME

“New study has doctors recommending you eat your weight in cheese every day.” Ugh, another medical study funded by Big Parma

The #SchoolStrikeForClimate protests in Melbourne have been huge as students take to the streets over the lack of government action in tackling the #climatecrisis. Follow live updates in our blog bit.ly/3SKofUM Here are some of the pictures coming in from the Melbourne #schoolstrike4climate protest

My first attempt at focaccia. It is a big reward for little effort kinda bread. Recipe from Alexandra cooks.

This little blue tongue visited me this week. First time I’ve seen one on my property.

This is really excellent from Evan Young. 'Why myalgic encephalomyelitis/chronic fatigue syndrome is nothing like everyday tiredness' www.abc.net.au/news/2023-09...