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Jenny Meagher

@jennmeagher.bsky.social
230 followers 454 following 67 posts

Life stolen by Myalgic Encephalomyelitis. Waiting to be rescued by science. Science waiting to be funded by governments #MECFS

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Reposted by Jenny Meagher
Emerge Australia @emergeaustralia.bsky.social · 01/10/2026
💙 Nearly 2,000 Australians shared their experiences of ME/CFS and long COVID - thank you! The survey closed to new participants on 30 Sept, but if you’ve already started, you can return and complete it until 15 Oct. We’re so grateful. 💙Survey: zurl.co/S3aMW #countME
Emerge Australia Count ME graphic showing a diverse group standing together with their arms around each other. Text reads: “Already started the survey? Complete it by 15 October.” A banner says: “Nearly 2,000 voices. One extraordinary community.”
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sarah boothby @swastrosarah.bsky.social · 30/09/2026
m.youtube.com/watch?v=XPZp... 2022 #MillionsMissing in Parliament Square UK. Not until 2027 will @england.nhs.uk be abolished. 5 years, many more deaths. (Most are not reported. Some recorded as CFS). Thanks as always to @alemmatthees.bsky.social mentioned just after half way in.
m.youtube.com
Sarah Boothby at #MillionsMissing London 2022
YouTube video by The ME Action Network
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Lucibee @lucibee.bsky.social · 24/09/2026
If folks need an impression of how dismal things are wrt treatment of ME and LC in the NHS, you just need to look at the services stocktake that was done in January 2025. There was "no data" for ME/CFS clinic referrals.
Annex 1 - Data Dashboard - Long Covid ME/CFS Stock take December 2024. 

Highlighted box shows that there is NO DATA for total referrals to ME/CFS clinics for the period examined in the stocktake.
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Emerge Australia @emergeaustralia.bsky.social · 24/09/2026
The Australian: 600,000 Patients Risk Losing Care Over $220k Grant emerge.org.au/news/the-aus... @markbutlermp.bsky.social @sophiescott2.bsky.social @traceyspicer.bsky.social @mmissingaus.bsky.social
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George Monbiot @georgemonbiot.bsky.social · 22/09/2026
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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Sally @twisal.bsky.social · 20/09/2026
3 women in one day. And all we hear about is a fucking shark. #femicide #auspol #shark #war lnkd.in/p/gy8PMJMj
lnkd.in
A shark killed one man this week. Men killed three Australian women - YESTERDAY! Only one of these scenarios will receive widespread attention - and no, it won't be the fact that three women are…...
A shark killed one man this week. Men killed three Australian women - YESTERDAY! Only one of these scenarios will receive widespread attention - and no, it won't be the fact that three women are dead...
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Reposted by Jenny Meagher
FionaMECFS @fioname.bsky.social · 09/09/2026
Today, misinformed practitioners worldwide continue to exhort #mecfs patients to exercise - even though exercise is clearly contraindicated for the disease. The @nhmrc.bsky.social clinical guidelines can't come soon enough @markbutlermp.bsky.social @racgp.bsky.social 2/2
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FionaMECFS @fioname.bsky.social · 09/09/2026
10 years ago, Australian #mecfs sufferer Alem Matthees became significantly more unwell because he fought to uncover the truth about the highly flawed 'PACE' trial of graded exercise therapy & cognitive behavioural therapy. 1/2
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Antoinette Lattouf @antoinettelattouf.bsky.social · 10/09/2026
Hanson has turned attacks on journalists into a reliable political weapon, creating headlines while casting the media as the enemy. But as One Nation keeps picking fights, journalists need to ask what it will take to show solidarity with their peers under attack? www.ettemedia.com/how-journali...
ettemedia.com
How journalists can stop letting Pauline Hanson write the news agenda
Where is the journalist solidarity in defence of our craft that is under attack?
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Jenny Meagher @jennmeagher.bsky.social · 04/09/2026
🇦🇺 Do you live with #ME or #LongCovid ❓ We need YOU 🫵 Pls complete this survey if able and share 🙏 🗳️ More respondents means stronger evidence to take to government 📊 #mecfs #MyalgicEncephalomyelitis
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Zali Steggall @zalisteggall.bsky.social · 04/09/2026
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The Saturday Paper @thesaturdaypaper.com.au · 24/08/2026
“Internationally, Australia is well regarded for its gender responsive budgeting,” Sex Discrimination commissioner Anna Cody says. “But it would be helpful for the public to debate how decisions might be disadvantageous to half of the community.” trib.al/OzzwXM4
trib.al
‘A retrograde step’: NDIS cut without published gender data
The government’s refusal to release an assessment of the impact of NDIS reforms on women has drawn criticism that their safety and security has been sacrificed to meet Labor’s budget goals.
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Guardian Australia @australia.theguardian.com · 21/07/2026
How much does Australia spend on offshore detention in Nauru? | Fiona Katauskas
theguardian.com
How much does Australia spend on offshore detention in Nauru? | Fiona Katauskas
It’s hard to tell where it all goes… * See more of Fiona Katauskas’s cartoons here Continue reading...
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Jenny Meagher @jennmeagher.bsky.social · 21/07/2026
📣Hey cross benchers! Check out the @grattaninstitute.bsky.social analysis. It shows the #NDIS can be "saved" without the savage cuts to social participation. Pls stop these unnecessary cuts @davidpocock.bsky.social @mon4kooyong.bsky.social @helenhainesindi.bsky.social @stephhodgins-may.bsky.social
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Jenny Meagher @jennmeagher.bsky.social · 11/07/2026
Dear 🇦🇺 Parliamentary Friends of #MECFS Thousands of constituents w #MyalgicEncephalomyelitis or #LongCOVID need your help. @peterkhalilmp.bsky.social Pls save Emerge Australia from closure in Nov 2026 when federal government funding expires. @sophiescott2.bsky.social @traceyspicer.bsky.social
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The Australia Institute @australiainstitute.org.au · 08/07/2026
Friends of Australian Rock Art will discuss the significance of Murujuga's 50,000-year-old rock art and the ongoing damage from toxic industrial emissions which threaten its existence. 🗓️ Sunday 19 July 2-4pm AEST 📌 State Library Victoria, Melbourne 🎟️ theaus.in/4f4RJX0
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The Australia Institute @australiainstitute.org.au · 07/07/2026
Don't believe every housing headline. Or, as Chief Economist Greg Jericho puts it, maybe it's time to calm the farm. The latest data shows the outlook for house prices is more nuanced than the doom-and-gloom commentary suggests. Read the full analysis on The Point: theaus.in/4b7wym4
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The Australia Institute @australiainstitute.org.au · 07/07/2026
A 25% tax on gas exports could raise $17 billion every year. That's enough to cover the $16.3 billion annual cost of putting dental coverage into Medicare. ✍ Sign the petition to support a 25% gas export tax⤵️ theaus.in/4aALclF
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Jenny Meagher @jennmeagher.bsky.social · 20/06/2026
👀20 mins on #MECFS in recent 🇦🇺 Senate Estimates 🎥 tinyurl.com/2y4ww784 Thanks Senator Steele-John 🙏 Discussion covered telehealth barriers, housebound & bedbound patients, specialist access, long GP consults and disability support pathways @markbutlermp.bsky.social @senatoranneruston.bsky.social
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The Saturday Paper @thesaturdaypaper.com.au · 15/06/2026
With just 11 days allowed for submissions and three for hearings, the disability community testified to deep concerns and a lack of clarity over the sweeping reforms that Labor aims to push through parliament by July 2. trib.al/7hCDrWY
trib.al
‘I do not want to go back’: NDIS cuts spark new fears
With just 11 days allowed for submissions and three for hearings, the disability community testified to deep concerns and a lack of clarity over the sweeping reforms that Labor aims to push through parliament by July 2.
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The Australia Institute @australiainstitute.org.au · 13/06/2026
Australia Institute research shows voters across the political spectrum overwhelmingly support a 25% tax on gas exports. Yet the Australian Parliament has failed to act. ✍️ Join the call for a national plebiscite to introduce a 25% gas export tax! gas-plebiscite.australiainstitute.o…
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Guardian Australia @australia.theguardian.com · 11/06/2026
States tell Albanese government that NDIS changes could mean people with disabilities are shifted into hospitals
theguardian.com
States tell Albanese government that NDIS changes could mean people with disabilities are shifted into hospitals
Plan to move 240,000 people off scheme leads states and territories to jointly warn they can’t ‘deliver like-for-like services to people who are exited from the NDIS’ * Follow our Australia news live blog for latest updates * Get our breaking news email, free app or daily news podcast State and territory disability ministers have rung alarm bells over the Albanese government’s proposed overhaul of the NDIS, warning they can’t deliver “like-for-like services” for more than 200,000 participants expected to be shifted off the scheme by 2031. The Albanese government’s national disability insurance scheme bill is designed to dramatically curb the growth of the $50bn-a-year scheme by first reducing budgets and then the number of people who can access it from 2028. Continue reading...
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Jenny Meagher @jennmeagher.bsky.social · 11/06/2026
Dissent can be fun thepoint.com.au/news/260609-...
thepoint.com.au
Hundreds attend Kath & Kim-themed pro-Palestine fun run protesting Queensland hate speech laws
More than 200 Palestine supporters have dressed up in Kath and Kim-inspired activewear for a Brisbane fun run, with some risking arrest to raise funds for a High Court challenge to Queensland’s hate s...
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everyaustcounts.bsky.social @everyaustcounts.bsky.social · 10/06/2026
📺 Missed our community forum on the proposed NDIS changes? Hear from Senator Jordon Steele-John, Belinda Kochanowska and Naomi Anderson on what's at stake, what happens next, and why community action matters. 🎥 Watch: www.youtube.com/watch?v=yZLG... #ProtectOurNDIS #NDIS
Promotional graphic for an Every Australian Counts community forum. The graphic features the title "NDIS Cuts: What's at Risk + What We Do Next" and photos of Senator Jordon Steele-John, Belinda Kochanowska from Intrepidus Law, and Naomi Anderson from Villamanta. A large red button reads "Watch Now". The Every Australian Counts logo appears at the top left. A red patterned border runs down the right-hand side of the graphic.
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Jenny Meagher @jennmeagher.bsky.social · 06/06/2026
𝑸 Do 🇦🇺 Aussie GPs receive training to manage #MECFS while the new guidelines are under development❓ 🅰️ Not according to the govt in Senate Estimates. 🩺 Health dept official to investigate GP capability. Many thanks Senator Steele-John youtube.com/live/MPjhTy1... #MECFS #MyalgicEncephalomyelitis
youtube.com
Senate Community Affairs Legislation Committee | [Part 1] | 03/06/2026
YouTube video by Australian Parliament House Streaming Portal
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Jeremy Poxon @jeremypoxon.bsky.social · 01/06/2026
one more ceo sleepout will turn this around. one more cost of living tax cut. just one more foodbank drive, I swear www.theguardian.com/australia-ne...
theguardian.com
Australia’s 178 billionaires are $25.7bn richer than last year as 3.7 million live in poverty
Oxfam finds the 20 richest Australians now hold more wealth than the bottom 3 million households
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Jenny Meagher @jennmeagher.bsky.social · 02/06/2026
Check out this GetUp! Campaign to reform the press council! getup.to/reZy9uDCdWnT3
getup.to
Time to fix Australia's broken media
An independent movement to build a progressive Australia and bring participation back into our democracy.
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Emerge Australia @emergeaustralia.bsky.social · 12/05/2026
Our #MECFS Awareness Symposium is starting now. The Symposium, “The Hidden Harm of “Trying Harder”, is being recorded and will be available on our website in the coming days.
Emerge Australia’s ME/CFS Awareness Week Symposium Panel featuring six speakers, each smiling in individual squares with their names: Laura Allen, Louise De Pino, Kate Herbert, Carolyn Merritt, Anne Wilson, and Camille Williams. Text above reads: 'International ME/CFS Awareness Day symposium around the theme: The Hidden Harm of “Trying Harder”.' The design has a blue gradient background with the Emerge Australia logo.
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Emerge Australia @emergeaustralia.bsky.social · 05/05/2026
#PEM is real & not the same as fatigue. It is biological, not due to deconditioning or lack of motivation. Telling people to push through can cause harm. Join us 2pm AEST, Tuesday 12 May, for a conversation on recognition, validation & preventing harm. zurl.co/umjjR
Promotional graphic for Emerge Australia’s ME/CFS Awareness Week Symposium on 12 May at 2pm AEST. It announces the speaker panel for the one-hour online event, themed “The Hidden Harm of ‘Trying Harder’,” with a “Register Today” button. Five speaker headshots are shown and labelled: Louise De Pino, Kate Herbert, Carolyn Merritt, Laura Allen, Anne Wilson and Camille Williams.
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Emerge Australia @emergeaustralia.bsky.social · 11/05/2026
On Int #MECFSAwarenessDay, we launch: The Hidden Harm of “Trying Harder” focused on PEM. PEM is real and not the same as fatigue. It can deeply impact every part of a person’s life. It is widely misunderstood, dismissed, or reduced to simply being “tired. Access our PEM resources: zurl.co/3eeVl
Text: Emerge Australia International ME/CFS Awareness Day - 12 May. 
Emerge Australia logo at bottom left corner over a soft blue background.
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Jenny Meagher @jennmeagher.bsky.social · 06/05/2026
Grateful to @emergeaustralia.bsky.social for recognising Pete as a finalist for the #MECFS Awards for Journalism Excellence for: 🎧The Conditional Release Program podcast with @jacktheinsider.bsky.social & @joelhill.bsky.social The Pain of ME/CFS tinyurl.com/u5ycactu ✍️SBS Insight. Link in replies
tinyurl.com
The Conditional Release Program
Listen to The Conditional Release Program on RedCircle
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Emerge Australia @emergeaustralia.bsky.social · 06/05/2026
🌟 Celebrating David Tuller, senior fellow in public health and journalism at UC Berkeley, finalist in the #mecfs Awards for Journalism Excellence for his piece Open Mind Chronic Denial. 🔗 zurl.co/6S3JW 📢 Thank you David for highlighting ME/CFS through your work!
Promotional graphic inviting people to join a Media Award Finalist announcement. It features a black-and-white portrait of David Tuller wearing a baseball cap, framed inside a stylised computer window on a bright blue background with dotted accents. His name appears in a green label below the photo, with the Emerge Australia logo at bottom right and a megaphone icon at bottom left.
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Emerge Australia @emergeaustralia.bsky.social · 02/05/2026
Join us this #MECFSAwarenessDay for a patient-focused online symposium. Hear from speakers as they share insights on #PEM, triggers, baseline setting & building a practical toolkit. 🗓️ Tue 12/5 ⏰ 2pm AEST 📍 Register - zurl.co/S7Byi
Promotional graphic for Emerge Australia’s ME/CFS Awareness Week Symposium on 12 May at 2pm AEST. It announces the speaker panel for the one-hour online event, themed “The Hidden Harm of ‘Trying Harder’,” with a “Register Today” button. Five speaker headshots are shown and labelled: Louise De Pino, Kate Herbert, Carolyn Merritt, Anne Wilson and Camille Williams.
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Emerge Australia @emergeaustralia.bsky.social · 15/03/2026
Thank you to everyone who joined us at Parliament House and online for Fluctuating Energy, Fixed Systems. Speakers shared powerful experiences and insights on how rigid systems fail people with #mecfs & #longcovid. Watch the recording: zurl.co/qThaI #mecfsadvocacy
Blue promotional graphic titled “Parliamentary Friends of ME/CFS Meeting” with a “Watch Today” banner saying "Recording now available". Headshots of all ten speakers. Partner logos appear along the bottom (Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia).
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Emerge Australia @emergeaustralia.bsky.social · 12/03/2026
Thank you to those who helped invite MPs to the Parliamentary Friends of ME/CFS meeting. 34 parliamentarians/staff from their office attended the meeting. 14 sent apologies. We’re now following up with every office to keep ME/CFS firmly on the agenda. 🔗 zurl.co/qEaTP
Graphic for “Parliamentary Friends of ME/CFS Meeting” with hashtag #FairGoForME. Photo shows a close-up of a meeting booklet titled “Parliamentary Friends of ME/CFS: Fluctuating Energy. Fixed Systems,” with agenda details and a QR code. Text reads “Community Action. Parliamentary Impact.” Logos for Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and ME Group Australia appear along the bottom.
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Emerge Australia @emergeaustralia.bsky.social · 13/03/2026
New online module for GPs 🩺 ME/CFS in General Practice: From invisible to visible – a case-based module covering identification, diagnosis, stigma-aware communication and safe care. RACGP CPD points available. #GPeducation #GPtraining #MECFS
Blue Emerge Australia graphic with RACGP CPD Provider logo promoting a free clinical education module for health professionals. Text says, “Seeing your GP soon? Bring this link and ask them to complete the module,” with a “Link in caption” button. Photo shows a patient holding a phone displaying the module page while seated with a doctor.
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Emerge Australia @emergeaustralia.bsky.social · 10/03/2026
Today, we brought ME/CFS to APH. With the theme Fluctuating Energy, Fixed Systems, the PFG of ME/CFS meeting highlighted a stark truth: people with #MECFS & #longCOVID must use systems built for stability, consistency & recovery, while living with fluctuating and unpredictable capacity.
Navy blue background with photos featuring speakers from the meeting. ME/CFS Alliance logos appear along the bottom (Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia).
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Patient-Led Research Collaborative @patientled.bsky.social · 11/03/2026
We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @rthm.bsky.social to help patients & providers explore treatment options together. The guide focuses on 24 medications, but includes a few other interventions for breadth /1
rthm.com
Long COVID Treatment Guide
An evidence-supported guide covering treatments addressing multiple Long COVID symptoms & mechanisms — focused on prescription medication, with a limited set of supplements, OTC medications, procedure...
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Emerge Australia @emergeaustralia.bsky.social · 02/03/2026
📢 #MECFS needs political attention - and MPs need to hear from us. Email your MP (2 mins!) and urge them to attend the Parliamentary Friends of ME/CFS meeting on 10 March. Take action 👉 zurl.co/DG4nc Let’s fill the room. 💙 #FairGoForME #MECFSAllianceAustralia
Graphic promoting a “Parliamentary Friends of ME/CFS Meeting” with hashtag #FairGoForME. Three speech bubbles clipped to a clothesline read “We”, “need”, “you” in blue, red and green. A banner says “Parliamentary Friends of ME/CFS Meeting – Email your MP”. Logos along the bottom include Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia.
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Steph Hodgins-May @stephhodgins-may.bsky.social · 17/02/2026
We are a wealthy nation. Nobody should be turned away from accessing a safe place to sleep, or nutritious food, while 1 in 3 big corporations pay no tax.
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Emerge Australia @emergeaustralia.bsky.social · 15/02/2026
📢 #MECFS needs political attention - and MPs need to hear from us. Email your MP (2 mins!) and urge them to attend the Parliamentary Friends of ME/CFS meeting on 10 March. Take action 👉 zurl.co/UFRXm Let’s fill the room. 💙 #FairGoForME #MECFSAllianceAustralia
Graphic promoting a “Parliamentary Friends of ME/CFS Meeting” with hashtag #FairGoForME. Three speech bubbles clipped to a clothesline read “We”, “need”, “you” in blue, red and green. A banner says “Parliamentary Friends of ME/CFS Meeting – Email your MP”. Logos along the bottom include Bridges & Pathways, Emerge Australia, MEANA, ME/CFS Australia, and Myalgic Encephalomyelitis Group Australia.
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Emerge Australia @emergeaustralia.bsky.social · 12/02/2026
📅 Tue 10 March 🕚 11:00am–1:00pm AEDT (may finish earlier) Clinicians, MPs, researchers & people with lived experience will discuss the urgent needs of Australians with ME/CFS. 🔗 Register for Zoom: zurl.co/fyADw 📩 In-person (Canberra): information@emerge.org.au
Dark blue background with three illustrated hands holding green hearts. "Register Today: Parliamentary Friends of ME/CFS meeting. The 5 logos of the ME/CFS Alliance organisations are at the top on a white background - Bridges & Pathways, Emerge Australia, ME Advocacy Network Australia, ME/CFS Australia, Myalgic Encephalomyelitis Group Australia
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Emerge Australia @emergeaustralia.bsky.social · 02/02/2026
If you’re living with ME/CFS, long COVID, or want to volunteer as a ‘healthy control’ for medical research studies, becoming an AusME Registry participant is the simplest way to get involved in research! Sign up today and make a difference! zurl.co/4ebne
Promotional graphic showing a smiling older woman hugging a young man on a couch. Text reads: “AusME From one small act comes big hope,” “Join the AusME today,” and “Your contribution could help unlock answers for millions worldwide who are still waiting for hope and healing,” with the Emerge Australia logo.
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Adam @abrokenbattery.bsky.social · 08/01/2026
BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid. youtu.be/eu8Lj_R-OtQ?...
youtu.be
BBC Inside Science - £1.1M ME/CFS and Long Covid Study
YouTube video by Broken Battery
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ThereForME @thereforme.bsky.social · 22/01/2026
Big congratulations to @tessamunt.bsky.social! Tessa has been an incredible advocate for the community and we look forward to working with her in this new role 🙌
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Led By Donkeys @ledbydonkeys.org · 24/01/2026
Board of Peace - Season 1
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Emerge Australia @emergeaustralia.bsky.social · 16/01/2026
Meet our new Parliamentary Friends Group members. Co-chaired by Dr Mike Freelander and Senator Jordon Steele-John, our first meeting of 2026 is to be advised. zurl.co/EpRFU
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Jenny Meagher @jennmeagher.bsky.social · 13/01/2026
When Poppy Bradley, 25, was diagnosed with #MyalgicEncephalomyelitis #MECFS three years ago, she had to find new ways to stay connected. @theageaustralia.bsky.social ✍️Pen pals and snail mail clubs: Why Gen Z is reviving the art of letter writing. By Lauren Ironmonger
Woman with red hair sitting on bed reading a letter
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