ME CFS & Long Covid Group Coffs Harbour

26/04/2026

Completely unacceptable and discriminatory. Change is urgently needed. Air travel is already challenging enough for people with disabilities and can be a very dehumanising process. Not every person with a disability has the time, capacity, or resources to ensure that every individual assisting them holds the required permit. Adelaide Airport Channel 10

15/04/2026

🩺 Clinical Guidelines Update

The NHMRC ME/CFS Clinical Guideline Development Committee recently held its fourth meeting. During this session, committee members heard from the ME/CFS Diagnosis Working Group (a subgroup of the committee) and agreed on methods for developing and organising the new guideline.

📄 Read the NHMRC meeting summary:
https://zurl.co/I21q7

15/04/2026

Mothering in absentia
Written by a mother with Myalgic Encephalomyelitis (ME/cfs)
as a response to Cynthia Banham's piece about mothering with a disability. Link to article in comments.

The Age Good Weekend Magazine The Sydney Morning Herald

Mark Butler MP Jim Chalmers MP Dr Mike Freelander MP Rebecca White


"Disability places you outside the mothering mainstream and because of this, it makes your family, in some ways, outsiders too. It can be exhausting, trying to convince yourself that you have just as much right as anyone to be a mother."

Myalgic Encephalomyelitis Group Australia Ltd Tom Kindlon's ME CFS & related page: News, Research and more Emerge Australia Inc

03/04/2026

May 12 Awareness Day is fast approaching 💙🦋💙. The international campaign this year, which runs from 9-12 May, will be ‘Frail And Furious’.

This , we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. Join us: millionsmissing.org

Government and healthcare systems around the world fail to understand myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Diagnoses are often delayed for years, disability qualifications are complicated, and our health care is at risk.

Over and over again, people with ME and Long COVID are asked to prove their medical frailty - how sick we really are.

We ask you to share your story about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve.

Injustices are happening worldwide because ME is not taken with the seriousness we deserve. It’s why we are asking you to amplify the medical frailty of ME. We are frail and furious and we need you to join this fight!



Image description: New Frail and Furious logo plus the MEAction logo on red slightly swirled background. "Frail and Furious" is shown on a swath of white paint. Underneath is the text " " but the second I is the outline of a person. MEAction logo is a circle with the text in the circle.

16/03/2026

Today, we brought the realities of ME/CFS to Australian Parliament House.

Under the theme Fluctuating Energy, Fixed Systems, the Parliamentary Friends of ME/CFS meeting highlighted a stark truth: people living with ME/CFS, long COVID and other energy limiting conditions are forced to navigate systems built for stability, consistency and recovery, while living with fluctuating and unpredictable capacity.

As James Dunn said:
“Our rigid systems are asking the sickest people to do the most work to prove they are sick and to get treatment for their sickness.”

This must change.

People with ME/CFS and long COVID need systems that recognise fluctuation, reduce harm, and respond with urgency. That means better clinical education, earlier diagnosis, informed care, stronger recognition of post-exertional malaise, and sustained investment in research and support.

As Dr Emma Tippett said:
“The cost of doing nothing vastly outweighs the costs of acting.”

Australia can and must do better.

Tag your local MP in the comments and ask them to back urgent action on ME/CFS and long COVID.

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

For clarity: during the meeting, Anne mistakenly said that the RACGP had withdrawn its HANDI guidance on ME/CFS. What she intended to say was that withdrawal of the guidance was recommended in an article published in the Australian Journal of General Practice, the academic journal of the RACGP. We unreservedly support that recommendation.

14/01/2026

Tom ist immer voller Energie, bis er an ME/CFS erkrankt. Heute lebt er isoliert im Dunkeln. Sein bester Freund Jonas zeigt den Kampf um Freundschaft, Anerken...

13/01/2026

"I was just suffering this suffocating fatigue, really excruciating pain," she told Mamamia. https://bit.ly/4bqUrWB

03/12/2025

Ahead of this Severe ME Day — August 8th — the World ME Alliance is proud to launch a vital new publication: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians All over the world, Severe ME patients struggle to get the medical care they need. Too often they are...

03/12/2025

Today is International Day of People with Disability (IDPwD). In Australia, is about recognising the 5.5 million Australians living with with disability.

Today on International Day of People with Disability, we highlight those living with fluctuating and invisible illnesses like and .

These conditions are too often overlooked, yet the symptoms are very real and can be profoundly disabling, whether every day or during post-exertional malaise (PEM).

1 in 4 people with ME/CFS are so severely affected that they are housebound or bedbound, needing help with everyday activities.

Support is available. Some people with ME/CFS may be eligible for the NDIS and/or the Disability Support Pension, helping them stay connected with their community, maintain independence or access support for everyday needs.

You can learn more here: https://emerge.org.au/about-me-cfs/managing-me-cfs/

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22/11/2025

Supporting ME/CFS patients who are bedbound 💙

Supporting the Bedbound: Practical Guidance for ME/CFS Care

Around 25% of people with ME/CFS are so severely impacted that they are housebound or bedbound, requiring complex, compassionate care. For these individuals, everyday tasks—eating, bathing, or even tolerating light and sound—can become overwhelming.

As part of our collaboration with Emerge Australia Inc, we’re highlighting their comprehensive guide on caring for people with ME/CFS who are bedbound. This evidence-based resource offers practical strategies for daily care, communication with healthcare professionals, and managing symptom sensitivity while protecting both patient and caregiver wellbeing.

Explore the full guide here: https://bit.ly/4nD2Add