Alice Rumble
@alice__rumble
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Disabled writer and advocate living with ME/CFS. She/her. E: [email protected]
New South Wales, Australia
Joined August 2014
A love letter to my disability, Myalgic encephalomyelitis https://t.co/fIEPnRxbZV via @ABCaustrali
#MyalgicEncephalomyelitis #DisabilityPride #Disability #DisabledStories #Spoonie #ChronicFatigueSyndrome #ABCNews
abc.net.au
Although I've had to grieve my past self, my disability, Myalgic encephalomyelitis, has freed me from the weight of my own expectations about who I should be — and helped me become braver than I ever...
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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
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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
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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
Help us get ME/CFS on ABC's Q+A on Monday. Use the #QandA hashtag and share your experiences and difficulties in accessing the NDIS and living with ME/CFS! #EmergeAustralia #MECFS #askQandA #abc #NDIS #equity #government #invisibleillness #disability #disabilitysupport
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#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. https://t.co/80f9nQQ7lx
@SenatorJordon @MariaVamvakinou #PACE #MECFS
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@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." https://t.co/ri6VhTKdf7
news.griffith.edu.au
Calls for new national clinical guidelines to improve the care of hundreds of thousands of Australians with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and potentially thousands more...
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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 😊
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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
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.
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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:
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.
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This is Stanley. He's very excited because today is going to be a great day. Can just feel it. 12/10
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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 https://t.co/QLAi2QSpEo
theguardian.com
The Yale professor and long Covid expert on why the virus is causing ongoing illness for so many, and the challenges she faces as a woman of colour in science
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First: The overall prevalence of #LongCovid is 10% at 6 months! The prevalence for those who got Omicron (or later) AND were vaccinated is also 10%! This was a cohort enrolled in the acute phase, before they knew if they had LC - these are extremely reliable numbers. 2/
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By golly, #UNREST is an extraordinary documentary. Thank you @jenbrea #MECFS #LongCovidKids #Fibromialgia #EDS #MCAS #dysautonomia
https://t.co/UuOITB3GFz
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This is Gracie. She understands the value of taking a moment to soak it all in. 14/10
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“As the conversation around the ‘sustainability’ of the NDIS continues to reverberate in the public discourse… I wonder what additional barriers our govt could possibly put in place.” Fab article by @NataliaHodgins on marginalised diseases.
refinery29.com
I deserved help, care and support from the day I became disabled. Why did I have to wait six years to access it?
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@ElizaCharley @FairlieHall @ItbeginswithZ @MeanderingPark @NataliaHodgins @alice__rumble @EmergeAus @MEAdvNetAu @mecfsaustralia @JasperPeachSays @itmePZ @JennMeagher @jan_nahlinke @hausofhemlock @FionaPWME @shellchat @AnthonyLevin @DanMissailidis @tinakatsaros @mcseeley @australia_call @emerge @MEGroupAust @mecfs_aust_sa @MECFSAustLtd @mildTin @madeleinedaisyr @maddyoby More and more clinicians I know are finding it harder and harder to take on more #mecfs , the #longcovid 1-2 year trough phase is arriving made it even harder to cope with the volume of patients, the complexity.
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