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 Outdated medical education.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.

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. 1/

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

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....

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

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)

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)

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...

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

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#longCOVID& 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

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...

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

#JohnVsJonVsME is back! #ValentinesDay edition! Which late-night great John Oliver @lastweektonight.com or Jon Stewart @weeklyshowpodcast.bsky.social will be first to win our hearts & cover the #GreatestMEdicalScandal! #pwME (MEme c/o @diatoma.bsky.social ) Here’s how you can join the LoveFest🧵

Life with ME/CFS is not a day at the beach, help us get back to our lives by exposing the #GreatestMEdicalScandal like only your hard hitting mix of humor and reality can. 💖👆💖 #JohnVsJonVsME johnvsjon.com @lastweektonight.com

Pedro Pascal on why he chose this essay #SevereME #MECFS #LongCovid #GreatestMEdicalScandal #JohnVsJonVsME

Dear allies of patients with #MECFS and #LongCovid, many of you probably know the patient-driven campaign trying to get the ‘titans of satire’ #JohnOliver and #JonStewart to cover #MECFS and the #GreatestMEdicalScandal (for more information please follow @johnvsjonvsme.bsky.social).

#JohnVsJonVsME #GreatestMEdicalScandal youtu.be/5YeZH9RLMJk?...

Ken you do it @lastweektonight1.bsky.social @thedailyshow.com @weeklyshowpodcast.bsky.social Covering #GreatestMEdicalScandal was what you were made for!😘Break the misogynist BPS spell this #ValentinesDay ! Check out johnvsjon.com for how #JohnVsJonVsME (MEme c/o @mecfsmama.bsky.social)

Roses are red Violets are blue Jon Stewart advocated for people with a stigmatized illness And you can too 💘 @lastweektonight1.bsky.social #JohnVsJonVsME #GreatestMEdicalScandal MEme c/o @diatoma.bsky.social

Justice for M.E. is long overdue! Can we catch the attention of @thedailyshow.com and @lastweektonight1.bsky.social and finally expose the greatest medical scandal? Tag your fellow Guardians and let us know who your favourite Sailor is🌙 #JohnVsJonVsME #TheGreatestMedicalScandal #mecfs

#JohnVsJonVsME LoveFest 💘 ENCORE!!!🎤 Final MEmes & credits 🎆to close out our event for @lastweektonight.com @thedailyshow.com @weeklyshowpod.bsky.social & why their showcasing #GreatestMEdicalScandal would have a lasting impression on our 💞. 🧵(MEme c/o @emilyesfraser.bsky.social)

Such wisdom and honesty in @elizacharley.bsky.social’s words here about the complicated issue of hope in #MECFS

Worth a read. 👇🏼 #MECFS #PWME #LongCovid

Share a story by @ElizaCharley.bsky.social: smileforme.org.uk/shareastoryelizacharley 🩵

The Aussies & Kiwis will start us off on Feb 14th 💘 their time (7pm Sydney / 9pm Auckland) 🌏. As #ValentinesDay continues & Europe/Africa 🌍 wakes up, then Americas 🌎, join the LoveFest ❤️💗❤️& ask the Jo(h)ns again to cover #GreatestMEdicalScandal. (MEme c/o @elizacharley.bsky.social ) 4/

January’s newsletter: smileforme.org.uk/january2025 Includes this month’s share a story by @elizacharley.bsky.social. Eliza, Australian actress and ME advocate, explores her complex relationship with hope and looks to redefine it in 2025.

After 15 years with #MyalgicEncephalomyelitis, I‘ve had complex relationship with hope. I wrestle with it this month in a piece written for @smileformecharity.bsky.social Would love to hear if this resonates #ChronicIllness #MECFS #pwME

After 15 years with #MyalgicEncephalomyelitis, I‘ve had complex relationship with hope. I wrestle with it this month in a piece written for @smileformecharity.bsky.social Would love to hear if this resonates #ChronicIllness #MECFS #pwME

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

There's nothing this virus cannot accomplish in Neurology. onlinelibrary.wiley.com/doi/10.1111/...

Article on medical gaslighting in Australia by Zoe Simmons - includes a bit on my daughter with #MEcfs @elizacharley.bsky.social - link to article in next post

Thank you Zoe Simmons. Almost every person w #MECFS has experienced medical abuse. Grateful to @elizacharley.bsky.social and Amelia Tang for sharing your stories. @emergeaustralia.bsky.social #MyalgicEncephalomyelitis

Excellent Australian piece about medical gaslighting & misogyny of ppl with diseases like #mecfs. Thank you Zoe Simmonds & participants 😊 www.news.com.au/lifestyle/he...

Testing matters. It is useful and can guide some treatment options, giving us a chance at improving ability for ADLs and QOL. It is one important piece 🧩 in starting to tackle the growing burden of #LongCovid. It is also validating for patients & their families in the face of stigma. #TeamClots

And me! 🙋‍♀️

Me too‼️‼️‼️

I want to see testing for Microclots, Hyperactived platelets, Endothelial damage be available and accessible in Australia ASAP. #pwME #pwLC #LongCovid #LongCovidKids #LongCovidAustralia