Alice Rumble

A love letter to my disability, Myalgic encephalomyelitis abc.net.au/news/2021-11-2… via @ABCaustrali #MyalgicEncephalomyelitis #DisabilityPride #Disability #DisabledStories #Spoonie #ChronicFatigueSyndrome #ABCNews

@soph_frog Cath and Ray pies!

My family is running a #deadloch bet, we’re all putting our best guess into a sealed envelope before we watch on Friday. If anyone else wants to participate leave your theories in the comments before Friday

@MeanderingPark I’m so sorry, what a gut punch. If you can manage A) yay, if you need to C) also great. But B) is probably not possible 💔

#QandA #MECFS @EmergeAus #NDIS @QandA

On the day of my first AAT conference, the NDIA immediately conceded & granted me access. Confirming that the previous 2 years were an unnecessary and expensive waste of everyone’s time. It caused me so much distress that my condition worsened. 2/2

It took 2 years & 2 rejections to get on the NDIS. I’m an ex lawyer, multiple lawyers helped w my app. I had extensive detailed medical reports from many medical experts. It felt like assessors saw ‘ME’ on my file and automatically rejected. I involved my local member 1/2

What life can become for the millions of people living with myalgic encephalomyelitis. When even the most basic everyday activities are out of reach. #pwME #MillionsMissing

#ParlFriendsOfMECFS Due to a delayed start, Spokesperson for ME/CFS Australia Penelope McMillan was asked to cut her presentation time in half. Here is the planned presentation with transcript and slides. mecfssa.org.au/event/parliame… @SenatorJordon @MariaVamvakinou #PACE #MECFS

@sophiescott2 @SenatorJordon @MariaVamvakinou @KyleaTink @EmergeAus "Annual research funding for ME/cfs in Australia is currently $6/person for the 240'000 ME/cfs patients in Australia. This pales in comparison with $4'338 per person for an estimated 2'272 patients with MND, or $151 for an est 33'300 people with MS." news.griffith.edu.au/2023/06/13/top…

@sophiescott2 @SenatorJordon @MariaVamvakinou @KyleaTink @EmergeAus Thanks for your advocacy Sophie and @SenatorJordon @MariaVamvakinou @EmergeAus @australia_call @PenelopeJaneMcM 🙏. So nice to feel some momentum 🤞

Finally some action on giving patients with #MECFS a voice where it’s needed - thanks @SenatorJordon @MariaVamvakinou @KyleaTink @EmergeAus Next step is up to date evidence-based guidelines for clinicians so people get the care they need 😊

@PenelopeJaneMcM They were really powerful slides and stories, it would be great to have a recording at some point. Thank you for your advocacy

Thank you. I am disappointed that people who gave me permission to share their photos and stories weren't all able to be presented. I plan to record my presentation tomorrow, with slides and transcript, so people can experience it.

An Australian professor recognised as a world expert in ME/CFS — chronic fatigue syndrome — says Australia's treatment guidelines failed to reflect scientific advances in the pathology of the illness. abc.net.au/news/2023-06-1…

@JasperPeachSays us02web.zoom.us/j/88962701771

Catch the Parliament House event online today (Tues 13 June) at 11am AEST. (Yours truly is on the speaking agenda, representing ME/CFS Australia.) Here is the webinar link: us02web.zoom.us/j/88962701771

@JasperPeachSays Keen as mustard! Flexible with time and format xx

Hi ME/CFS crew in Aus, if you’re attending the Parliamentary Friends event next Tuesday & haven’t invited your MP to attend - please do so! Here’s a template you can use to invite them. Also, as per @JennMeagher’s advice, calling the office to follow up & confirm works a charm!

This is Stanley. He's very excited because today is going to be a great day. Can just feel it. 12/10

just finished watching the ted lasso finale

1) "I always have in the back of my mind – how can these insights from #longCovid help people with #MECFS & other post-acute phases of infections, like post Lyme disease? I’m so excited about receiving this new award because it shows that long Covid and theguardian.com/society/2023/m…