Eliza Charley | Actress on Pause

Something different - interview about our learnings as a parent of sometimes with ME i.e. @elizacharley.bsky.social and using our science brains to try to make a difference ⚕️

Australia is a medically advanced country - but not for ppl with #mecfs. Tens of thousands of lives laid waste. Negligible federal funding. Outdated medical education. No effective treatments. No cure. We're watching you @markbutlermp.bsky.social @albomp.bsky.social. #auspol Remember: we vote too.

🐺 howling together 💕

I am truly grateful for all the disabled and chronically ill people who share their experiences with me for stories. I know it's hard, but real life narratives can impact readers who may start to stand up for disabled and chronically ill people more.

Today (Sunday in Australia) is the last day to weigh in on the AUS survey for their new ME guideline.

It’s brief and international folks can participate! As national guidelines in any country often end up influencing others, I think it’s a good use of a few mins—this could affect all of us.

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Tweet from Eliza Charley | Actress on Pause @ElizaCharley I wrote to the NHMRC & checked - International people can contribute. Select "other" on location 🌍 Want to help us see an end to Graded Exercise Therapy in Australia? Wish we could finally get rid of the old myths like "deconditioning" & "illness beliefs"? 5/ 4:47 AM • Apr 26, 2025 • 1,621 Views

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!

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2 weeks until the Australian federal election - Do your candidates support the 4 commitments for MECFS and Long Covid?

Created with cooperation from 5 key charities and organisations: www.emerge.org.au/news/address...
#AusPol #AustraliaVotes

📣 It’s finally out out - initial guidance to address the spectrum of LC as a disease & reinforces the need for translational research & large-scale treatment trials for treatment protocols.

🌍 🫶🏼 🙏 to the 179 exerts who collaborated from 28 countries

ann-clinmicrob.biomedcentral.com/articles/10....

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 ❤️‍🩹

As always, Paul, you're on the money.

Most estimates are from clinics and extrapolation.

There's a much deeper amount of ice below the surface.

2 weeks until the Australian federal election - Do your candidates support the 4 commitments for MECFS and Long Covid?

Created with cooperation from 5 key charities and organisations: www.emerge.org.au/news/address...
#AusPol #AustraliaVotes

I’m a writer looking to follow more people with ME/CFS and other chronic conditions to learn about their experiences and what they want to see in terms of access and solidarity from the rest of the disabled community. Lmk if there’s anyone you think I should follow.

#ME/CFS #LongCOVID #Disability

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

Yes we signed it like the breakfast club. How many other film references can you spot in our Dear John letter to John Oliver & Jon Stewart? (#JohnVsJonVsME)

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

Yes we signed it like the breakfast club. How many other film references can you spot in our Dear John letter to John Oliver & Jon Stewart? (#JohnVsJonVsME)

A meme of John Oliver and Jon Steward's faces photoshopped onto a valentine card. IT reads "Forget M.E.- Not, #JohnVsJonVsME #GreatestMEdicalScandal". There are hearts and forget me not flowers all around.

Through memes & "laughtivism", a group of creative advocates started the humorous #JohnVsJonVsME campaign, calling on the late night hosts to expose the medical scandal of the overlooked disease.

Op-ed the by the campaign's founders in @thesicktimes.bsky.social

thesicktimes.org/2025/03/31/t...

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

People keep saying Covid is here to stay and we’ve “learned to live with it”.

No we haven’t. We’ve capitulated to it.

We’ve accepted repeat infections as inevitable.

Learning to live with it would involve clean air, masks in healthcare, better tests & treatments and free respirators

Gracias to @thesicktimes.bsky.social times for featuring our words on the #JohnVsJonVsME @johnvsjonvsme.bsky.social campaign and why we’re ‘committing to the bit’ and betting on laughtivism to get the word out on #GreatestMEdicalScandal, (1/3)

thesicktimes.org/2025/03/31/t...

Thanks for sharing Billy!

Emerge Australia Long COVID Awareness Week Symposium 2025 Emerge Australia Long COVID Awareness Week Symposium 2025

3/12/25, “Emerge Australia Long COVID Awareness Week Symposium 2025”

Speakers include:

- Dr. David Putrino
- Dr. Bernard Shiu
- Eliza Charley
- CEO Anne Wilson
- @plumskyjam.bsky.social

vimeo.com/1065043928

Accurate statistics for ME and Long COVID are vital. That’s why I started a patient-led organization to “crunch” the diseases. - The Sick Times Since falling ill with myalgic encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — m...

Today @thesicktimes.bsky.social: @rorpreston.bsky.social shares why he founded CrunchME, a new patient-led organization seeking to compile evidence and accelerate research on ME, Long COVID, and other IACCs. thesicktimes.org/2025/03/11/a...

The only difference between a temp abled person & a disabled one is luck & time

Their good health isn’t due to “trying harder” or moral superiority. It’s luck

Health can be taken away at any moment, and if you live long enough you will almost certainly experience disability

Be kind. Be inclusive.

.@emergeaustralia.bsky.social’s #longCOVID awareness week symposium was today! The panel was @putrinolab.bsky.social, @plumskyjam.bsky.social, @elizacharley.bsky.social & Dr Bernard Shiu. Great discussion and thread! #mecfs #ChronicIllness

Learn about #LongCovid - featuring daughter @elizacharley.bsky.social who had #ME (fyi not exactly the same) - hate to think how much precious energy she used doing this

Sign up and Share ✨ Wednesday 12 March 2pm AEDT - Long Covid Awareness Online Symposium

Registration is Free! Sign up now: https://vist.ly/3mwjynk

🎙️ Speakers include Professor David Putrino, A/Prof Bernard Shiu, Plum Stone, Eliza Charley
@putrino_lab @plumskyjam @elizacharley