Jenny Meagher (@JennMeagher) header
Jenny Meagher (@JennMeagher) profile picture

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

Joined May 2014
Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)Photo by Jenny Meagher (@JennMeagher)
Jenny Meagher retweeted
Bloomberg: 'Chronic Fatigue Was Neglected for Decades. Then Came Covid' 'ME/CFS patients battled for recognition as researchers struggled for funding. The pandemic finally gave science the scale to start finding answers' By Jason Gale bloomberg.com/news/articles/…
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Jenny Meagher retweeted
I can't help but wonder if everyone at the @NIH #RECOVERTLC #LongCOVID workshop this week had to feel this physical pain I'm in now, skin on fire from MCAS, POTS & PEM flares pulling me under, how much faster we'd work. Our advocacy is such costly, precious fuel for change. ♿️
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It's almost like history is repeating itself 🙄 #MyalgicEncephalomyelitis #mecfs
A US study found 93% of medical students had no formal Long COVID training, even though 41% had seen Long COVID patients. After an online course, students felt more confident about understanding and treating Long COVID, with 75% saying they'd change how they care for patients.
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Jenny Meagher retweeted
Hugely compelling argument. Govt under pressure to cut spending and likely public services while haemorrhaging dollars on a mirage.
AUKUS Public Inquiry Commissioners’ Report launch starting now on ABC. Full house at National @PressClubAust
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Jenny Meagher retweeted
Updated signatures, total now over 400 ❤️
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Jenny Meagher retweeted
Hi everyone, we’ve been working on something 🙏🏼 I’ve written a second letter to Andy Burnham, alongside 360 sports people, to urge him to meet with me and fund research into my much neglected health issue which impacts millions of others. I can’t believe 360 people signed in just 1 week, so many amazing names and messages still coming in of people wanting to add theirs (so feel free to message to add yours, we’re keeping on the pressure!!!) The list includes 114 Olympians, with 77 medals between them (and that’s not even including Worlds and Europeans 🤯). Also some huge names from football and many other sports!! Thank you SO much to everyone that signed, I can’t tell you how much it means to me when I’m truly at rock bottom ❤️❤️❤️ I know everyone wants their issues taken seriously, but this has been neglected like nothing else. WE HAVE 0 APPROVED TREATMENTS!!! Please listen 🙏🏼 @andyburnham @number10gov @UKLabour @DHSCgovuk
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Jenny Meagher retweeted
As a former medical researcher with many years of experience with clinical trials, I know how long it takes to secure approvals and navigate commercialisation. This week I've been working hard to convince the government to drop its proposed new limit on the R&D Tax Incentive for companies older than 15 years. This change could have a chilling effect on research and development across Australia, particularly in the biotech, life sciences and manufacturing sectors. Kooyong-based companies have told me they're thinking of moving to Singapore or New Zealand, where there's better government support for innovative R&D. I'm grateful to my crossbench colleagues for joining me in this fight. afr.com/politics/federal/lab…
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Jenny Meagher retweeted
Gutted to see our national science organisation keep losing talented scientists & expertise built up over decades. A further 86 FTE positions cut in the lead up to Christmas, is devastating for those impacted, our community + sovereign capability. Short-term thinking at its worst. We need to ⬆️ our scientific capacity & R&D spend to confront the challenges facing us. canberratimes.com.au/story/9… Join me in calling for the government to save our CSIRO: davidpocock.com.au/save_our_…
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Jenny Meagher retweeted
"Some Recent Observations from Alem Matthees" virology.ws/2026/10/30/trial… A rare in-depth insight into how difficult (esp. mentally) surviving with very severe ME is where very minor activities (such as thinking of most sorts) can trigger postexertional malaise #MEcfs #VerySevereME
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BBC Coverage of @BethDobbin letter to @andyburnham ! Thank you @KatieFalkingham The BBC have asked @10DowningStreet for comment. Note: Commonwealth diver Archie Goodburn received a swift & very positive response for brain cancer: 👉 National lead 👉 Immediate expert review 👉 A national action plan 👉 Faster regulatory reform 👉 National conference 👉 Improved clinical trial access Can ME & Long Covid diseases that predominantly affect women & NO NHS care for the severe expect a response that meets the need?! 🖇️👇
💌 Excellent letter by Beth Dobbin to @andyburnham Her post received 1.2 million views on IG! Andy we urgently need: 1) NHS commissioned care for severe ME 2) Select committee inquiry 3) National clinical lead/Tsar 4) Research funding + more
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Jenny Meagher retweeted
From Kooyong to Indi 🧡 We send our love and support to Helen, her family, her staff, and her community.
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Jenny Meagher retweeted
Short #MECFS explainer for children from German TV. Includes an explanation of post-exertional malaise (PEM), the worsening of symptoms after activity. Note: People can recover. Older studies suggest around 5–10% of adults make a full recovery.
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A candle for Helen Haines
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Jenny Meagher retweeted
As we think best thoughts for dear Helen Haines, my thoughts go back to this… ▪️The ‘Inquiry into Health Services for the Psychiatrically Ill and Developmentally Disabled’ was the 1983 Richmond Report. ▪️It led to closure of the big institutions replacing them with struggling community-based care and underfunded regional mental health services. ▪️Deinstitutionalisation was sorely needed but the neoliberal laissez-faire number-crunchers saw it just as a way to save government costs. ▪️I saw firsthand the effects, good and bad, and was engaged in picking up the pieces of this systematic failure. ▪️So many lives were lost or wasted, families left in misery, ‘clients’ left to twist in the wind, and generations of under-treated cases of mental illness drifting, sometimes screaming, through our communities. ▪️Only when there are murders - as in Bondi Junction - or attacks on prominent individuals - Helen Haines allegedly - does attention fall onto this monstrous ongoing community disaster. 👉 If this is not good enough, we need to pay the costs to fix it. 👉 If the public coffers are bare, then we need to raise taxes. 👉 We need to make the resource companies, banks, wealthy corporations, and the 1% uber rich pay, they can afford it. Whose community is it anyway? — “I absolutely think there is more that the system can do to prevent people that are unwell causing harm.” theage.com.au/national/victo…
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Jenny Meagher retweeted
💙 Today is #POTSAwarenessDay We’re introducing our new #decisionaid, #OrthostaticIntolerance: Should I Be Tested? for people with #MECFS or #longCOVID experiencing symptoms when upright. We’d love your feedback. Learn more: zurl.co/aPX3x
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Jenny Meagher retweeted
Helen Haines attack: If Pauline Hanson can wise up, surely everyone else can too theage.com.au/politics/feder… Excellent piece covering what urgently needs to happen. Our precious Australian society is breaking down through a flawed political economy with rampant inequality
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Jenny Meagher retweeted
AND WE & THEY KNOW mental health supports are threadbare! Bits of funding over the years have been inadequate and can no longer be relegated in budget priorities.
The horrific attack on Helen Haines revealed 2 threats to Australian society. The surge in abuse of & threat to our elected representatives & the threadbare state of State mental health systems which must be completely rebuilt. Community safety at stake. We can’t jail this away.
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There's a sad irony here. A court has heard the man who allegedly drove his car into MP Helen Haines suffers from a neurological disorder, and concussion. Recently, Dr Haines called for a neurological nursing workforce and national action plan for such conditions.
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Jenny Meagher retweeted
The horrific attack on Helen Haines revealed 2 threats to Australian society. The surge in abuse of & threat to our elected representatives & the threadbare state of State mental health systems which must be completely rebuilt. Community safety at stake. We can’t jail this away.
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