News from Australia

I did not know Alem’s history, thanks very much for sharing. He said:
[…] I am still bedbound now, still unable to talk, or listen to music, or watch TV. But I will do more when able to, this is a natural instinct or process and needs no intrusive input from others. It happens whenever people get over a cold or flu, I doubt there are tens of millions of people getting stuck in a vicious self-perpetuating cycle of symptoms, fear avoidance, deconditioning, and symptom focusing. It just goes against human nature […]
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Very well said. My early experiences relapsing and remitting and returning each time to as much work and exercise as I could are in total agreement with this. When healthy, we naturally increase our activities and fill our lives.
 
Email from OMF today (I haven't found a news article yet but will post when spotted) —

We are very pleased to share that Dr Christopher Armstrong and his team at Open Medicine Foundation's (OMF's) Melbourne ME/CFS Collaboration have been awarded nearly $1 million ($999,977.50) through the Medical Research Future Fund (MRFF) Post-Acute Sequelae of COVID-19 (PASC) Stream 1 grant, for the project Energy inefficiency in Long COVID and ME/CFS.
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Importantly, this funding is a direct response to the Australian Government’s Long COVID Inquiry, Sick and tired: casting a long shadow. While the inquiry committed $50 million to Long COVID research, Recommendation 8 specifically called for dedicated investment in ME/CFS research, which has historically received limited Australian government funding despite now affecting an estimated 930,000 Australians.
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www.abc.net.au

Chronic Fatigue Syndrome new research - ABC listen

New Australian research confirms people with ME/CFS have a consistent faulty cellular structure. Could this be a turning point in diagnosis?
www.abc.net.au www.abc.net.au


Program:Chronic Fatigue Syndrome new research​

Program:Nightlife
2 hours ago
Play
Duration: 26 minutes 6 seconds 26m



It has long been one of the most complicated and complex medical conditions and routinely dismissed by friends, family and even medical professionals because - maybe it's in your head?

Myalgic Encephalomyelitis or Chronic Fatigue Syndrome has never had a one-stop reliable diagnostic test, the cause can be unknown and the symptoms are broad.

The only sure thing is how debilitating it is to have ME/CFS.

But my next guests have dedicated years of their professional careers to ME/CFS .. one in the lab, the other in the doctor's surgery.

The Director of Griffith University's National Centre for Neuroimmunology and Emerging Diseases (NCNED) and senior author of a new Australian study that could be a turning point for understanding and treatment of ME/CFS .. Professor Sonya Marshall-Gradisnik and Dr Peter Smith - a clinician who treats ME/CFS patients and allergy specialist with a PhD in molecular biology joined Bern Young on Nightlife.

​

 
From Emerge’s Facebook:

ME/CFS Alliance Australia and co-chair Dr Mike Freelander MP invite you to attend the first, 2026 meeting of the Parliamentary Friends of ME/CFS group.

This meeting will bring together members of parliament clinicians, researchers, and people with lived experience to highlight the urgent and growing needs of Australians living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Date: Tuesday, 10 March 2026
Time: 11:00am – 1pm AEDT (May finish earlier)
Venue: Online via Zoom

Register for Zoom here - https://zurl.co/fyADw
For in-person attendance at Australian Parliament House Canberra email information@emerge.org.au as seating is limited.

Fibromyalgia ME CFS Australia Bridges & Pathways ME Advocacy Network Australia ME/CFS Australia Myalgic Encephalomyelitis Group Australia Ltd Dr Mike Freelander MP Mark Butler MP

#mecfsallianceaustralia #mecfsadvocacy #FairGoForME
 
Dolphin said:
From Emerge’s Facebook:

ME/CFS Alliance Australia and co-chair Dr Mike Freelander MP invite you to attend the first, 2026 meeting of the Parliamentary Friends of ME/CFS group.

This meeting will bring together members of parliament clinicians, researchers, and people with lived experience to highlight the urgent and growing needs of Australians living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Date: Tuesday, 10 March 2026
Time: 11:00am – 1pm AEDT (May finish earlier)
Venue: Online via Zoom

Register for Zoom here - https://zurl.co/fyADw
For in-person attendance at Australian Parliament House Canberra email information@emerge.org.au as seating is limited.

Fibromyalgia ME CFS Australia Bridges & Pathways ME Advocacy Network Australia ME/CFS Australia Myalgic Encephalomyelitis Group Australia Ltd Dr Mike Freelander MP Mark Butler MP

#mecfsallianceaustralia #mecfsadvocacy #FairGoForME
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Also:

ME/CFS Alliance Australia needs your voice - and your MP needs to hear from you!

The Parliamentary Friends of ME/CFS meeting is happening on 10 March and ME/CFS Alliance Australia has sent invitations to all federal parliamentarians.

We need as many MPs and Senators as possible in the room to hear lived experience, see the evidence, and understand the urgent need for action.

You can help right now: send a pre‑written email to your MP in just 2 minutes.
Take action here: https://zurl.co/QXG3B

Your voice matters. Your story matters. And your MP won’t know unless you tell them.

Let’s fill that room on 10 March and make ME/CFS impossible to ignore.

Fibromyalgia ME CFS Australia Bridges & Pathways ME Advocacy Network Australia ME/CFS Australia Myalgic Encephalomyelitis Group Australia Ltd Dr Mike Freelander MP Mark Butler MP

#FairGoForME #MECFSAllianceAustralia
 
www.nationaltribune.com.au

New National Project to Improve Care for Australians Living With Long Covid

A new project by researchers at the University of Tasmania’s Menzies Institute for Medical Research will deliver a care model for Long COVID that aims
www.nationaltribune.com.au www.nationaltribune.com.au

PERCEIVE-Outreach Project
A new project by researchers at the University of Tasmania’s Menzies Institute for Medical Research will deliver a care model for Long COVID that aims to improve health outcomes and enhance quality of life – while easing pressure on the healthcare system.
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To ensure it can meet real-world needs, this project will be fully remote and co-designed with patients, clinicians, and health services. A large trial will evaluate its effectiveness, feasibility, and sustainability across Australia.
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The project aims to reduce hospitalisations, improve quality of life, and deliver strong returns on investment for health services by maximising resource efficiency.
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Key features of the project:
  • Co-design and scaling: Working with patients, clinicians, and health services to adapt and refine the intervention for national rollout.
  • Risk-based approach: Using a novel algorithm to identify patients most at risk of physical and cardiac dysfunction.
  • Remote delivery: Making care accessible to people wherever they live.
  • Rigorous evaluation: Conducting a randomised controlled trial to test effectiveness and sustainability.
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Chronic fatigue over chronic fatigue reform - Medical Republic

A parliament hearing has heard from ME/CFS advocates on where and how healthcare needs to step up to address the under-recognised field.
www.medicalrepublic.com.au www.medicalrepublic.com.au

A parliament hearing has heard from ME/CFS advocates on where and how healthcare needs to step up to address the under-recognised field.​
​
“I feel personally that long covid is the biggest health crisis to-be that Australia has encountered at this stage,” Dr Tippett said.
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“Covid is estimated to affect 1% of the GDP, which is $1 trillion – but this figure doesn’t capture the full picture or the human costs.

“It doesn’t describe the unpaid care burden falling on families, the mental health impact on households, the downstream costs of increased medical usage and the lives that have been changed forever by long covid.”

“The cost of doing nothing vastly outweighs the costs of acting.”
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AI Summary:
A parliamentary hearing gathered lawmakers, clinicians, researchers, and people with lived experience to discuss long COVID and ME/CFS and the need for improved healthcare responses. Seventeen-year-old patient Henry Barker described the conditions as isolating and said the lack of public understanding makes life especially difficult for teenagers.

Participants said progress on reforms has been slow, with little action on recommendations from the 2024 government inquiry, including creating specialist centres in each state to support research. Dr Emma Tippett argued that current support is disproportionate to the number of Australians affected and called long COVID a major emerging health crisis, with estimates ranging from 400,000 to up to one million cases. She said the illness is often invisible and its economic and social costs—including unpaid care and mental health impacts—are underestimated.

Only three publicly funded long-COVID clinics remain in Australia and none provide paediatric services. Officials and MPs discussed potential reforms, the role of the new Centre for Disease Control, and a government plan to invest $109.9 million in a chronic conditions framework from 2026–2035.
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From Emerge Australia’s Facebook:

Recording now available!

Thank you to everyone who joined us at Parliament House and online for the Parliamentary Friends of ME/CFS meeting, Fluctuating Energy, Fixed Systems.

Speakers shared powerful experiences and insights on how rigid systems fail people with ME/CFS and other energy limiting conditions.

When energy fluctuates but systems stay fixed, people fall through the cracks. This must change.

If you missed the meeting, the full recording is available on our website: https://zurl.co/qThaI

#fairgoforME #MECFSallianceaustralia #mecfs #longcovid #longcovidawareness #longcovidawarenessweek #mecfsadvocacy #emergeaustralia

Myalgic Encephalomyelitis Group Australia Ltd ME/CFS Australia ME Advocacy Network Australia Fibromyalgia ME CFS Australia Bridges & Pathways Dr Mike Freelander MP Mark Butler MP Dr Monique Ryan Rebecca White
 
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