🎥 ✨Actress who cares about #mecfs #longcovid #climate #dv #auspol Aussie in Italy 🎭co-founder Mi Casa Theatre 📚Words in Soul Tread & Routledge Press She/her.

Florence, Tuscany
Joined December 2011
Despite best efforts of many brilliant minds, government funding for Long Covid in many countries seems to continually be directed towards studying ‘lifestyle’ & ‘wellness’ factors. — As someone who has had relapsing-remitting MECFS for 12 yrs, I can share a few experiences:🧵1/6
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Eliza Charley retweeted
It turns out people like competent governments
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I was explaining to a loved one how unwell I am lately (a severe PEM crash) and they asked if I’d contacted my doctor. I then had to explain that there is nothing they will or can do. It’s truly awful. #MECFS #LongCovid
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Eliza Charley retweeted
The Vigil for those who have died from COVID is being held tomorrow night - thank you to @CraigWtweets and team for your superb organising on this. @_Nic_Lee and I fly in tomorrow, bringing with us a tapestry of inverted black triangles, one for every 4 Australians who have died.
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Eliza Charley retweeted
We are flipping the model. Patients and those impacted by research decide where funding will impact them goes. #patientledresearch #fundingmodels #impactfunding @patientled
Our Patient-Led Research Fund is funding 9 incredible studies into #LongCovid and associated conditions. Our Fund put patients in the driver's seat, deciding research priorities and what to fund.
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Eliza Charley retweeted
Wow, THANK YOU all for the overwhelming response on @patientled's biomedical fund decisions! It has been an effort with many, many moving parts. I'd like to highlight my brilliant teammates and multidisciplinary work behind the scenes, especially from people of colour. 🎉 /1
Big news! We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today! These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects! patientledresearch.com/press… 1/
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Eliza Charley retweeted
Like tens of thousands of others, I’ve tested positive for Covid after managing to avoid it for almost three years. I should be fine as I’m fully vaccinated and not in a risk group. But let’s acknowledge the ONE HUNDRED AND THIRTY Australians who died this week 👇👇
🇦🇺Australia's weekly COVID numbers - 25 Nov 2022 🔸Deaths - 130 (+10) 🔸Cases - 88,212 (+8,469) Jurisdiction / cases / deaths 🔹NSW: 31,531 / 25 🔹VIC: 22,281 / 68 🔹WA: 10,520 / 15 🔹QLD: 10,082 / 14 🔹SA: 9,000 / 8 🔹TAS: 2,712 / 0 🔹ACT: 1,757 / 0 🔹NT: 329 / 0
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Eliza Charley retweeted
Solve M.E. is cheering for all awardees, and is proud of the researchers who received early funding from our Ramsay Research Grant program, including Drs. Jonas Bergquist, David Esteban, Liisa Selin & Anna Gil, @RobWust, Wenzhong Xiao, and Jarred Younger.
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Eliza Charley retweeted
Sobering to think that this is one sixteenth of the number of Australians dead of COVID, @CraigWtweets
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Eliza Charley retweeted
Husband is working at the Melbourne Disability Expo today. Just told me pretty much no one is wearing mask. At a disability expo. 🤦‍♀️
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Eliza Charley retweeted
It’s been amazing watching what good independents can achieve in federal politics, we need it at the state level too!
It's the state election today! 🗳️ I'm supporting the community independents in Hawthorn & Kew -@mel4hawthorn & @Sophie4Kew- because, like me, they believe in action on climate change & integrity in govt. I'd encourage everyone to vote for what matters to them today. #VicVotes22
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Eliza Charley retweeted
Democracy sausage report: outstanding offerings at Boroondara and Canterbury Primary Schools. Off to investigate Camberwell High and Kew Primary. It’s a tough job but I’m up for it. #
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I am an @RACGP member. Why, @brookmanknight, are masks not being mandated? Why would the RACGP want to hold a superspreading event in the middle of a wave during a pandemic? Why do I even have to ask this?
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Eliza Charley retweeted
Can everyone please stop adding their Mastodon usernames to their Twitter names? It’s really frustrating for screen reader users. Hearing them being read out loud when scrolling down my timeline isn’t fun. Add it to your bio or make a pinned tweet instead.
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Eliza Charley retweeted
We've known for too long that GET harms people who have PEM as a symptom to still be doing this #longcovid #mecfs
1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worse How can exercise be so bad for #pwME but so good for almost every other serious illness? THREAD
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Eliza Charley retweeted
UNSW Fatigue Clinic's submission to the #Longcovid inquiry (no. 289) recommends GET🚨🚨🚨 This is recognised by the WHO as harmful! Can we catch up with the science please and stop harming patients cc @ElizaCharley @TraceySpicer @Mon4Kooyong @liammannix
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Here it is! @gezmedinger & I interview #LongCovid titans @resiapretorius & @dbkell about the latest research from #TeamClots including #MECFS & #vaccineinjuries. More videos featuring Resia, Doug & Jaco to follow.
In episode 2 of our ‘microclots’ series, @doctorasadkhan and I talk to @resiapretorius & @dbkell - about how long haulers blood compares to those with diabetes & ME/CFS, and which labs are blazing a trail right now to push the science forwards. 1/2 redirect.invidious.io/2Q2tf9E3kzw
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Eliza Charley retweeted
State governments are removing PCR testing, this places pressure on GP’s if patients require access to antivirals in a timely manner. Insurance companies are requiring positive PCR tests if a person ends up with a disability from a covid infection. Everyone needs PCR access.
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Eliza Charley retweeted
Clinics like this proposing GET when it is contraindicated for many patients with #LongCovid is yet another example of why making the claim you’re “evidence-based” doesn’t mean you’re actually based in reliable evidence! #pwLC #pwME #StopTheHarm cc @LongCOVIDPhysio @PhysiosForME
1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worse How can exercise be so bad for #pwME but so good for almost every other serious illness? THREAD
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Eliza Charley retweeted
“1 in 22 will have a major cardiac event within 12months of catching covid. 1 in 5 will develop #longcovid following their infection. One American scientist says ‘we don’t know everything about long covid yet, but what we do know is downright terrifying.’” #CovidIsNotOver
Highlights Baroness Brinton speaking at the Long Covid debate in the House of Lords 17 Nov 2022. She describes a study that is only looking at psychological factors as "breathtaking". #longcovid #mecfs
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