News from Australia

Moved post

Article in The Coversation. Note, also posted up thread here.

Title is
It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired

Published: June 19, 2025 6.09am BST
By Sarah Annesley, La Trobe University

theconversation.com

It’s not just ‘chronic fatigue’: ME/CFS is much more than being tired

A growing body of scientific evidence shows myalgic encephalomyelitis chronic fatigue syndrome – or ME/CFS – is a biological illness, not a psychological one.
theconversation.com theconversation.com

Eta

I came across it in a ME Research Facebook post. It's from an Australian perspective.

I don't think it's especially effective . It's says it's making the point that it's not just fatigue but then only really emphasises "two core symptoms" - fatigue and pem so for me it fails to get across the whole gamut of immunological and neurological (and often other systemic) symptoms pwme experience.

Then it gets into the psychological debate which it seems is always a minefield...
 
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Hutan said:
He's an odd character, Andrew Lloyd. It's hard to work him out. I think possibly he started out genuinely wanting to find the answer to CFS, and, when it wasn't easy to find, he fell into BPS - although I don't know. David Tuller has interviewed him once or twice I think. Perhaps Lloyd is seeing which way the wind is blowing and is re-making his legacy?
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A odd character is an understatement. The shocking 2002 Australian GP guidelines did enormous damage to ME/CFS patients down under which basically cast us aside from medical treatment. The 2006 Dubbo study was published and made a big impact but soon after he was referencing Peter White and Simon Wessely studies. The last year he has been presenting more on a physiological sickness response being the likely cause. I have never been able to get my head around him.

Professor Andrew Lloyd | Better Together 2024 – Australian POTS Foundation

potsfoundation.org.au potsfoundation.org.au
 
An excellent statement from some of the participants on SBS Insight's Invisible Illness program mentioned above:


SBS Insight Invisible Illness – Statement by 4 Studio Participants​

Published: 23 June 2025

Invisible, Misrepresented, and Harmed: ME/CFS Voices Demand Accountability from SBS
A Joint Statement from Participants and Advocates in Response to the 20 May 2025 Episode of Insight
This statement has been prepared by a group of individuals who participated in the recent SBS Insight episode on invisible illness. We are united in our deep concern over how the episode was produced, edited, and presented and the serious harm it caused by misrepresenting Myalgic Encephalomyelitis (ME/CFS) and its impact on the wider chronic illness community.
We believe this broadcast represents a clear breach of SBS’s own Code of Practice. The program:
  • Failed to uphold editorial integrity by platforming a participant with undisclosed commercial interests (Section 3.1: Editorial Independence and Integrity);
  • Presented medically inaccurate and misleading portrayals of ME/CFS (Section 3.2: Accuracy);
  • Minimised the diversity of lived experiences in favour of a single recovery narrative (Section 3.3: Diversity of Views and Perspectives);
  • Caused emotional harm to participants and viewers alike (Section 4.1: Harm and Offence);

    As a public broadcaster, SBS has a duty to ensure ethical, accurate, and inclusive storytelling, especially when dealing with marginalised communities.
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  • (More at the link)
 
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Emerge Australia:

Just a reminder: The 2025 ME/CFS & Long COVID Media Awards are now open for nominations!

Your nominations are crucial in highlighting journalism that changes how ME/CFS and long COVID are perceived. Let's celebrate reporting that amplifies patient voices, dismantles stigma, and deepens public understanding.

️ Eligibility: Work published or broadcast between 1 Jan – 31 Dec 2025
Nominate articles, radio, TV, digital, or podcasts
Open to Australian and international entries

Help us honor courageous, truthful, and compassionate storytelling.

Learn more and submit your nominations here: https://vist.ly/3y6pp
 
Pete McCluskey, an Australian ME/CFS advocate appeared on the "Conditional Release Program" podcast. The podcast is run by prominent journalist "Jack the Insider".

Episode 187 - The Pain of ME/CFS

I am too unwell to listen to it at the moment so I'll copy a summary from Emerge:

ME/CFS advocate and carer, Pete McCluskey joined Jack the Insider on his "Conditional Release Program" podcast, for an in-depth conversation covering critical issues affecting people with ME/CFS. They talked about:

- Living with ME/CFS
- The recent SBS Insight episode
- Harm caused by Graded Exercise Therapy (GET)
- RACGP’s outdated HANDI guide
- Updating Australia's ME/CFS clinical guidelines
- Chronic lack of Federal funding.

Jack did a fantastic job navigating this complex story with insight and care.
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This story was reported on local news yesterday:


There is fresh hope for long COVID sufferers, who are battling debilitating symptoms and get a diagnosis. Researchers are working to give patients answers with a blood test.
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More information on the study:

You can help create a world-first test for long Covid!​

Recruitment is underway for an Adelaide-based study that could help produce the world’s first diagnostic test for long Covid.

The million-dollar study is co-funded by The Hospital Research Foundation Group (THRFG), The University of Adelaide and the Australian Government through the Medical Research Future Fund (MRFF) and builds on earlier research also supported by THRFG.

Currently, no single test exists to diagnose long Covid, leaving millions of people worldwide struggling for answers.

However, a landmark discovery by South Australian researchers has identified a potential biomarker for long Covid, raising hopes that a future diagnostic test might not be far away.

The multidisciplinary team, led by University of Adelaide Associate Professor Branka Grubor-Bauk and Professor Simon Barry, were among the first in the world to show that Covid-19 can disrupt the immune system long after the initial infection.

“Our study was one of the first in the world to show that the immune system remains dysfunctional even six months after you’ve had Covid-19,” said A/Prof Grubor-Bauk
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I had a quick look to see if the study mentioned above had been discussed on S4ME, but only came across this study involving Grubor-Bauk.

Edit: perhaps it is this one: Long-term perturbation of the peripheral immune system months after SARS-CoV-2 infection, 2022, Ryan et al
 
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thebuglenews.com.au

When carers need care: Celebrating lived experiences

The Illawarra ME/CFS, FM & Long COVID Support Group shines a light on carers' resilience and the need for better support this National Carers Week.
thebuglenews.com.au thebuglenews.com.au

For the carers of Australia during this week of recognition Deirdre, and the Illawarra ME/CFS, FM and Long COVID support group have this message: “To our caregivers in the community, thank you for your respect, compassion and patience among many other incredible personal qualities that connect us to a better quality of life”.
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AI Summary:
The article highlights the experiences of carers within the Illawarra ME/CFS, FM & Long COVID Support Group, emphasizing how caregiving roles can shift unexpectedly within families. Co-coordinator Deirdre Backhouse explains that the group offers emotional and practical support for people with chronic illnesses, regardless of illness severity. Carers often face challenges balancing responsibilities such as medical coordination, daily routines, and advocacy, all while managing limited support—especially from government systems like the NDIS. Deirdre notes that current policies don’t reflect up-to-date science, making access to support difficult.

As part of National Carers Week (12–18 October), the theme “You are, know, or will be one” reflects the reality that nearly 10% of Australians are caregivers. The article calls for better collaboration among government services and more accessible pathways for funding and support. The group is affiliated with Emerge Australia, a leading advocacy organisation for ME/CFS. In 2024, the government pledged $1.13 million toward education and research in this area, but more needs to be done.

Deirdre ends with a message of gratitude: thanking carers for their compassion and resilience, qualities that play a vital role in improving the quality of life for those they support.
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Hutan said:
Trial Report Pacing, conventional physical activity and active video gaming to increase physical activity levels for ME/CFS: pilot feasibility study, 2025, Tarca +

The South Australian study aiming to increase the physical activity of people with ME/CFS through video gaming has published the results - no increase in physical activity.
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At the time I was concerned it would do harm, and said so to various people. I wonder how all the adverse events were handled, and what they were.
 
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