Eliza Charley | Actress on Pause
@elizacharley.bsky.social
Actress on Pause with Myalgic Encephalomyelitis
🌍 Florence, Italy <-> Melbourne, Australia
🎙️ Writer, Producer, Actor
🦋Living that Stockdale Paradox life
🌍 Florence, Italy <-> Melbourne, Australia
🎙️ Writer, Producer, Actor
🦋Living that Stockdale Paradox life
Pinned
Made the jump 🦋 let’s reconnect!
👋 Hi I’m Eliza Charley:
🎭 Film & Theatre Actress on Pause due to #MyalgicEncephalomyelitis
🇦🇺 🇺🇸 🇮🇹 Australian who fell in love with an Italy-raised American boy
📝 🎙️ 📣 Health-pending I spend time writing, producing, speaking, and advocating
👋 Hi I’m Eliza Charley:
🎭 Film & Theatre Actress on Pause due to #MyalgicEncephalomyelitis
🇦🇺 🇺🇸 🇮🇹 Australian who fell in love with an Italy-raised American boy
📝 🎙️ 📣 Health-pending I spend time writing, producing, speaking, and advocating
Reposted by 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 ⚕️
New podcast alert! Ep #2 of "When Science Becomes Personal" features Profs. Ros & Andy Gleadow discussing their fight for their daughter's life through science. Hear about "Team Eliza" & ME clot testing. Subscribe at https://www.emerge.org.au/podcast/episode-40-profs-ros-and-andy-gleadow/
May 8, 2025 at 1:42 PM
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 ⚕️
Reposted by Eliza Charley | Actress on Pause
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 Outdated medical education.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.
25% of ME/CFS patients and many long COVID patients are housebound or bedbound. They need better care! Visit your election candidates' page today and tell them you will vote for the candidate who will give people with #MECFS and #longCOVD a #FairGoForME #AusVotes2025 #AusPol
April 22, 2025 at 9:01 AM
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 Outdated medical education.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.
Reposted by Eliza Charley | Actress on Pause
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.
April 28, 2025 at 7:49 PM
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.
Reposted by Eliza Charley | Actress on Pause
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.
1/
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.
1/
Scoping survey for Clinical Practice Guidelines for myalgic encephalomyelitis / chronic fatigue syndrome
- NHMRC consultation hub
- Citizen Space
Find and participate in activities run by NHMRC consultation hub
consultations.nhmrc.gov.au
April 26, 2025 at 10:04 PM
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.
1/
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.
1/
Reposted by Eliza Charley | Actress on Pause
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!
4/4
4/4
April 26, 2025 at 10:13 PM
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!
4/4
4/4
Reposted by Eliza Charley | Actress on Pause
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
Created with cooperation from 5 key charities and organisations: www.emerge.org.au/news/address...
#AusPol #AustraliaVotes
April 21, 2025 at 10:00 AM
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
Created with cooperation from 5 key charities and organisations: www.emerge.org.au/news/address...
#AusPol #AustraliaVotes
Reposted by Eliza Charley | Actress on Pause
📣 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....
🌍 🫶🏼 🙏 to the 179 exerts who collaborated from 28 countries
ann-clinmicrob.biomedcentral.com/articles/10....
April 21, 2025 at 6:11 AM
📣 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....
🌍 🫶🏼 🙏 to the 179 exerts who collaborated from 28 countries
ann-clinmicrob.biomedcentral.com/articles/10....
Reposted by Eliza Charley | Actress on Pause
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.
Most estimates are from clinics and extrapolation.
There's a much deeper amount of ice below the surface.
I would imagine 400million LC victims are the tip of the iceberg. Most do not assign their new normal to LC.
April 21, 2025 at 7:46 AM
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.
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
Created with cooperation from 5 key charities and organisations: www.emerge.org.au/news/address...
#AusPol #AustraliaVotes
April 21, 2025 at 10:00 AM
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
Created with cooperation from 5 key charities and organisations: www.emerge.org.au/news/address...
#AusPol #AustraliaVotes
Reposted by Eliza Charley | Actress on Pause
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
#ME/CFS #LongCOVID #Disability
April 20, 2025 at 7:18 PM
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
#ME/CFS #LongCOVID #Disability
Reposted by Eliza Charley | Actress on Pause
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
November 16, 2024 at 6:42 PM
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
Reposted by Eliza Charley | Actress on Pause
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)
April 4, 2025 at 12:33 PM
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)
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)
April 4, 2025 at 12:33 PM
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)
Reposted by Eliza Charley | Actress on Pause
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...
Op-ed the by the campaign's founders in @thesicktimes.bsky.social
thesicktimes.org/2025/03/31/t...
April 1, 2025 at 5:51 PM
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...
Op-ed the by the campaign's founders in @thesicktimes.bsky.social
thesicktimes.org/2025/03/31/t...
Reposted by Eliza Charley | Actress on Pause
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
April 1, 2025 at 5:51 PM
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
Reposted by Eliza Charley | Actress on Pause
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
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
March 30, 2025 at 10:15 PM
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
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
Reposted by Eliza Charley | Actress on Pause
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...
thesicktimes.org/2025/03/31/t...
The history of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign. - The Sick Times
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is precisely why the #JohnVsJonVsME campaign began.
thesicktimes.org
March 31, 2025 at 6:22 PM
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...
thesicktimes.org/2025/03/31/t...
Reposted by Eliza Charley | Actress on Pause
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
Speakers include:
- Dr. David Putrino
- Dr. Bernard Shiu
- Eliza Charley
- CEO Anne Wilson
- @plumskyjam.bsky.social
vimeo.com/1065043928
Emerge Australia Long COVID Awareness Week Symposium 2025
Emerge Australia Long COVID Awareness Week Symposium 2025
vimeo.com
March 19, 2025 at 9:54 PM
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
Speakers include:
- Dr. David Putrino
- Dr. Bernard Shiu
- Eliza Charley
- CEO Anne Wilson
- @plumskyjam.bsky.social
vimeo.com/1065043928
Reposted by Eliza Charley | Actress on Pause
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...
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...
thesicktimes.org
March 11, 2025 at 5:17 PM
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...
Reposted by Eliza Charley | Actress on Pause
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.
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.
March 12, 2025 at 4:37 AM
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.
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.
Reposted by Eliza Charley | Actress on Pause
.@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
Our #longCOVID Awareness Week Symposium took place today. Thank to our fabulous panel and to the hundreds who attended.
If you missed it, here’s a summary of the event. 🧵
A recording will also be available on our website next week. #mecfs #ChronicIllness
www.emerge.org.au/what-we-do/c...
If you missed it, here’s a summary of the event. 🧵
A recording will also be available on our website next week. #mecfs #ChronicIllness
www.emerge.org.au/what-we-do/c...
March 12, 2025 at 6:56 AM
.@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
Reposted by Eliza Charley | Actress on Pause
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
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
March 10, 2025 at 6:32 AM
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
Reposted by Eliza Charley | Actress on Pause
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
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
March 6, 2025 at 1:30 AM
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
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
Reposted by Eliza Charley | Actress on Pause
Australia is developing new ME/CFS guidelines--a long-sought goal of patient advocates. A survey seeks input to help develop the guidelines: virology.ws/2025/03/03/t...
Trial By Error: Australian Survey Seeks Input for New ME/CFS Guidelines | Virology Blog
By David Tuller, DrPH Australia’s National Medical Health and Research Council (NMHRC) recently released what it calls a “scoping survey” as a first step in ...
virology.ws
March 3, 2025 at 9:44 PM
Australia is developing new ME/CFS guidelines--a long-sought goal of patient advocates. A survey seeks input to help develop the guidelines: virology.ws/2025/03/03/t...
Reposted by Eliza Charley | Actress on Pause
Looking for some fun advocacy that will make you laugh and bring joy? Check out this playful campaign happening tomorrow/Feb 14!!! Info below on how you can get involved!!! 👇 #pwLC #pwME #NEISVoid #DisabilityJustice #ValentinesDay
Ready for #JohnVsJonVsME #ValentinesDay LoveFest? Here's a TOOLKIT w/ details, sample posts/MEmes & ways to create your own Valentines💝--telling your Jo(h)n why you think he should be the first to cover #GreatestMEdicalScandal!
docs.google.com/document/d/1...
docs.google.com/document/d/1...
February 13, 2025 at 2:37 PM
Looking for some fun advocacy that will make you laugh and bring joy? Check out this playful campaign happening tomorrow/Feb 14!!! Info below on how you can get involved!!! 👇 #pwLC #pwME #NEISVoid #DisabilityJustice #ValentinesDay