Myalgic Encephalomyelitis Group Australia Ltd

16/06/2026

🤓🌻💙

11/06/2026

Voices of ME Carers

As part of National Carers Week, we are highlighting the often unheard voices of those who care for people living with Myalgic Encephalomyelitis (ME).

Behind every person with ME is often a family member, partner, parent, child, or friend providing support, advocacy, and care, frequently while navigating misunderstanding, isolation, and a lack of appropriate services.

These personal stories offer a powerful insight into the realities of caring for someone with ME, from the challenges of severe illness and long-term caregiving to the experiences of young carers growing up alongside the condition.

🧡

What ME Caregivers Want You to Know

This paper published in 2020 contains eight stories written by spouses, parents, and carers of people with ME.
Many discuss:

• Becoming advocates for their loved ones.
• Navigating disbelief from healthcare professionals.
• The hidden work involved in supporting someone with an unpredictable illness.
• The emotional impact of watching a loved one lose their health.

https://journals.sagepub.com/doi/10.3233/WOR-203171

Published by Sage Journals in 2020

🧡

Parents Caring for Adult Children with Severe ME

1. Diane's Story
Diane writes about caring for her daughter, who is completely bedbound with very severe ME. The account describes:
• The rapid onset of severe illness.
• The struggle to obtain diagnosis and support.
• The realities of providing long-term intensive care at home.

https://www.investinme.org/mestory1010.shtml

Published by Invest in ME Research 2013

🧡

2. Naomi’s Story
As part of National Carers Week June 2020, Naomi Whittingham (UK), who lives with Severe ME, talked in a radio interview about her carers - her mum, her brother Tom, and her sister Beth, who have all cared for her for years since she first became unwell.
You can read and listen via the link here:

https://alifehidden.com/2020/06/11/carers/

🧡

Young Carers

Ace's Story
Ace, a young carer, has been helping care for their mother since childhood after she developed ME following glandular fever. Ace speaks about how caring became part of everyday life and the need for greater understanding of young carers' experiences.

https://meassociation.org.uk/2025/06/carers-week-2025-ace-a-young-carers-story/

Published by the ME Association UK in 2025

🧡

We thank all carers for their dedication, resilience, and compassion.

11/06/2026

🙏🌻💙

The prolific and impressive Jodi Bassett, sufferer of severe M.E. and friend to many, has now been gone 10 long years. We miss her so much. Our thoughts are with her family.

From her sickbed she bridged the gap between the expertise of doctors who'd studied actual M.E. closely and the patients who needed that information, bringing together a team of MEites to compile important guides on caring for the M.E. patient, testing, and more.

This is the link to the archive of these information guides - feel free to explore this site, very generously put together by Jannik from ME-aktuell.de.

Because of the work led by Jodi, general knowledge about our illness is now so much advanced, although many of the politico-economic reasons for the low levels of support and diagnostic fudging accorded us remain.

And Jodi's stress on the relevance of distinguishing between M.E. and other conditions so all patients can receive treatment which is therapeutic rather than harmful, is an ongoing necessity.

I know many of us want to continue her work, in addition to just wanting her back as a friend.

Onwards with the struggle x

https://archiv.me-aktuell.de/public/hfme.org/informationguides.html #390414508

11/06/2026

💙

𝗡𝗖𝗡𝗘𝗗 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵𝗲𝗿 𝗗𝗿 𝗡𝗮𝘁𝗮𝗹𝗶𝗲 𝗘𝗮𝘁𝗼𝗻-𝗙𝗶𝘁𝗰𝗵 𝗽𝗿𝗲𝘀𝗲𝗻𝘁𝘀 𝗼𝗻 𝗵𝗲𝗮𝗹𝘁𝗵 𝗮𝗻𝗱 𝘄𝗲𝗹𝗹𝗯𝗲𝗶𝗻𝗴 𝗳𝗼𝗿 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮𝗻’𝘀 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗠𝗘/𝗖𝗙𝗦

The Young EMERG Symposium 2026 hosted Dr Natalie Eaton-Fitch who presented findings on symptom presentation and health-related quality of life on Australia’s largest dataset of people living with ME/CFS. This large-scale investigation highlights the significant symptom burden and reduced HRQoL in Australians with ME/CFS whilst emphasising the need for clustering and stratification for research in order to allocate resources.

These research findings are currently under review and we look forward to sharing these details with you all in the near future.

This research forms a critical component of our multidisciplinary research which aims to not only identify pathomechanisms, but to improve diagnosis and wellbeing of people with ME/CFS.

Best wishes,
Sonya and the NCNED team

NCNED would like to express our gratitude and appreciation to all the volunteers, Support Groups and the following Organizations:
• The Stafford Fox Medical Research Foundation
• National Health and Medical Research Council
• MERUK
• Dr John Hamwood
• The McCusker Charitable Foundation
• Mr Adrian Flack
• Talei Stewart
• The Alison Hunter Memorial Foundation
• The Buxton Foundation
• The Henty Community
• The Blake Beckett Foundation
• Change for ME Charity
• QLD ME/CFS/FM Support Association
• WA ME/CFS and Lyme Association
• Fibromyalgia ME/CFS Gold Coast Support Group Inc
• Tweed ME/CFS/FM Lyme Support Group
• ME/CFS South Australia Inc
• ME/CFS & FM Association NSW Inc
• ME/CFS Australia Ltd

Griffith University, Griffith Health, , , , , , , , , , , , , , , , , , , Tom Kindlon's ME CFS & related page: News, Research and more, ME/CFS Australia, ME Australia, ME CFS and Lyme Association of WA, ME/CFS/FM Support Association QLD Inc, Fibromyalgia me/cfs Gold Coast Support Group Inc., Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia, My QoL, ME/ CFS South Australia Inc, Myalgic Encephalomyelitis Group Australia Ltd, ME Research UK, Me/cfs San Diego, Myalgic Encephalomyelitis M.E Chronic Fatigue Syndrome CFS Science, Leeds ME Network, Stichting ME Research, Bristol ME Support Group, Oxfordshire ME Group for Action, ME Long Covid unite SA, May 12th International ME CFS FM Awareness Day Australia, FJD/Robotech Robot line markers Australia

09/06/2026

🤓🙏💙

𝗡𝗼𝘃𝗲𝗹 𝗱𝗶𝘀𝗰𝗼𝘃𝗲𝗿𝘆: 𝗜𝗺𝗽𝗮𝗶𝗿𝗲𝗱 𝗧𝗥𝗣𝗠𝟯 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 𝗱𝗶𝘀𝗿𝘂𝗽𝘁𝘀 𝗺𝗶𝘁𝗼𝗰𝗵𝗼𝗻𝗱𝗿𝗶𝗮𝗹 𝗰𝗮𝗹𝗰𝗶𝘂𝗺 𝗱𝗲𝗹𝗶𝘃𝗲𝗿𝘆 𝗶𝗻 𝗠𝗘/𝗖𝗙𝗦

Over many years, our team at the NCNED has produced rigorous scientific evidence demonstrating that problems with ion channels, particularly TRPM3, TRPM7 and TRPM2, disrupts calcium entry into the cells, providing important and evidence-based insights into the pathomechanism of ME/CFS.

Our latest research has pushed the envelope to take this work a major step forward. Five years ago, this idea was conceived. We then had the painstaking task of developing, testing and refining the technology to test our idea.

For the first time, we have been able to witness calcium movement inside components of living immune cells as outlined in the diagram below in real time using advanced imaging techniques.

𝗪𝗵𝗮𝘁 𝘄𝗲 𝗼𝗯𝘀𝗲𝗿𝘃𝗲𝗱 𝘄𝗮𝘀 𝗮 𝗰𝗹𝗲𝗮𝗿 𝗮𝗻𝗱 𝗰𝗼𝗻𝘀𝗶𝘀𝘁𝗲𝗻𝘁 𝘄𝗼𝗿𝗹𝗱 𝗳𝗶𝗿𝘀𝘁 𝗳𝗶𝗻𝗱𝗶𝗻𝗴 𝗿𝗲𝗽𝗼𝗿𝘁𝗶𝗻𝗴 𝘀𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁 𝗧𝗥𝗣𝗠𝟯 -𝗰𝗮𝗹𝗰𝗶𝘂𝗺 𝗱𝗲𝗽𝗲𝗻𝗱𝗲𝗻𝘁 𝗽𝗮𝘁𝗵𝘄𝗮𝘆 𝗱𝘆𝘀𝗳𝘂𝗻𝗰𝘁𝗶𝗼𝗻 𝗲𝗻𝘁𝗿𝘆 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝗺𝗶𝘁𝗼𝗰𝗵𝗼𝗻𝗱𝗿𝗶𝗮 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗠𝗘/𝗖𝗙𝗦.

𝗪𝗵𝗲𝗻 𝗧𝗥𝗣𝗠𝟯 𝗶𝘀 𝗻𝗼𝘁 𝗳𝘂𝗻𝗰𝘁𝗶𝗼𝗻𝗶𝗻𝗴 𝗽𝗿𝗼𝗽𝗲𝗿𝗹𝘆, 𝘀𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁 𝗰𝗮𝗹𝗰𝗶𝘂𝗺 𝗱𝘆𝘀𝗳𝘂𝗻𝗰𝘁𝗶𝗼𝗻 𝗼𝗰𝗰𝘂𝗿𝘀 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝗺𝗶𝘁𝗼𝗰𝗵𝗼𝗻𝗱𝗿𝗶𝗮, 𝘁𝗵𝗲 𝗽𝗮𝗿𝘁 𝗼𝗳 𝘁𝗵𝗲 𝗰𝗲𝗹𝗹 𝗲𝘀𝘀𝗲𝗻𝘁𝗶𝗮𝗹 𝗳𝗼𝗿 𝗿𝗲𝗴𝘂𝗹𝗮𝘁𝗶𝗻𝗴 𝗲𝗻𝗲𝗿𝗴𝘆 𝗽𝗿𝗼𝗱𝘂𝗰𝘁𝗶𝗼𝗻 𝗮𝗻𝗱 𝗺𝗲𝘁𝗮𝗯𝗼𝗹𝗶𝗰 𝗽𝗿𝗼𝗰𝗲𝘀𝘀𝗲𝘀.

𝗟𝗶𝗻𝗸: https://link.springer.com/article/10.1186/s12865-026-00849-1

This latest study provides for mechanistic explanation linking impaired TRPM3 function and reduced calcium entry into the mitochondria with the consequences on the low-energy state and symptoms experienced by people with ME/CFS.

This research at the NCNED is an example of our ongoing commitment to push the boundaries of technology and its application into pathomechanisms and drug investigations in ME/CFS.

NCNED is excited that other international researchers are now investigating ion channels and their role with calcium in ME/CFS as ion channels are not only present on the cell surface, but also ion channels are located inside the cell on other structures of the cell.

As the national peak research centre for ME/CFS, we have been working for some time on new innovative technologies for furthering our discoveries as well as new research findings that will be released later this year on TRPM8 activity and large-scale transcriptomic investigations.

The NCNED team would like every person with ME/CFS to know you are our first priority; we are driven and determined to make a difference for you.

Best wishes,
Sonya and the NCNED Team

NCNED would like to express our gratitude and appreciation to all the volunteers, Support Groups and the following Organizations:
• The Stafford Fox Medical Research Foundation
• National Health and Medical Research Council
• MERUK
• Dr John Hamwood
• The McCusker Charitable Foundation
• Mr Adrian Flack
• Talei Stewart
• The Alison Hunter Memorial Foundation
• The Buxton Foundation
• The Henty Community
• The Blake Beckett Foundation
• Change for ME Charity
• QLD ME/CFS/FM Support Association
• WA ME/CFS and Lyme Association
• Fibromyalgia ME/CFS Gold Coast Support Group Inc
• Tweed ME/CFS/FM Lyme Support Group
• ME/CFS South Australia Inc
• ME/CFS & FM Association NSW Inc
• ME/CFS Australia Ltd

Griffith University, Griffith Health, , , , , , , , , , , , , , , , , , , Tom Kindlon's ME CFS & related page: News, Research and more, ME/CFS Australia, ME Australia, ME CFS and Lyme Association of WA, ME/CFS/FM Support Association QLD Inc, Fibromyalgia me/cfs Gold Coast Support Group Inc., Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia, My QoL, ME/ CFS South Australia Inc, Myalgic Encephalomyelitis Group Australia Ltd, ME Research UK, Me/cfs San Diego, Myalgic Encephalomyelitis M.E Chronic Fatigue Syndrome CFS Science, Leeds ME Network, Stichting ME Research, Bristol ME Support Group, Oxfordshire ME Group for Action, ME Long Covid unite SA, May 12th International ME CFS FM Awareness Day Australia, FJD/Robotech Robot line markers Australia

03/06/2026

NCNED Researcher Mr Tanoj Singh presented the latest diffusion MRI research findings in ME/CFS and long COVID at the Young EMERG Symposium 2026, held on 25 - 26 May at Wellcome Genome Campus, Cambridge, UK.

Mr Singh showcased preliminary evidence of brain tissue microstructural alterations and demonstrated how advanced diffusion MRI modelling techniques can improve understanding of neurobiology underlying ME/CFS and long COVID.

His presentation emphasised the importance of incorporating advance neuroimaging methods to enhance the knowledge of neurological features associated with these conditions.

Best wishes,
Sonya and the NCNED team

NCNED would like to express our gratitude and appreciation to all the volunteers, Support Groups and the following Organizations:
• The Stafford Fox Medical Research Foundation
• National Health and Medical Research Council
• MERUK
• Dr John Hamwood
• The McCusker Charitable Foundation
• Mr Adrian Flack
• Talei Stewart
• The Alison Hunter Memorial Foundation
• The Buxton Foundation
• The Henty Community
• The Blake Beckett Foundation
• Change for ME Charity
• QLD ME/CFS/FM Support Association
• WA ME/CFS and Lyme Association
• Fibromyalgia ME/CFS Gold Coast Support Group Inc
• Tweed ME/CFS/FM Lyme Support Group
• ME/CFS South Australia Inc
• ME/CFS & FM Association NSW Inc
• ME/CFS Australia Ltd
• National Advocacy Advisory Council for ME/CFS

Griffith University, Griffith Health, , , , , , , , , , , , , , , , , , , Tom Kindlon's ME CFS & related page: News, Research and more, ME/CFS Australia, ME Australia, ME CFS and Lyme Association of WA, ME/CFS/FM Support Association QLD Inc, Fibromyalgia me/cfs Gold Coast Support Group Inc., Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia, My QoL, ME/ CFS South Australia Inc, Myalgic Encephalomyelitis Group Australia Ltd, Australian National Advisory Advocacy Council for ME/CFS Research - NAAC, ME Research UK, Me/cfs San Diego, Myalgic Encephalomyelitis M.E Chronic Fatigue Syndrome CFS Science, Leeds ME Network, Stichting ME Research, Bristol ME Support Group, Oxfordshire ME Group for Action, ME Long Covid unite SA, May 12th International ME CFS FM Awareness Day Australia, FJD/Robotech Robot line markers Australia

03/06/2026

Happy June!

Here is our June Newsletter. We hope you find this edition interesting.

Warmly
Team MEGA 💙

Happy June! Here is our latest Newsletter. We hope you find this edition interesting. Team MEGA

29/05/2026

💙

NCNED Researcher Mr Tuong Huynh presented the most recent research outputs at the Young EMERG Symposium 2026, held on 25 - 26 May at Wellcome Genome Campus, Cambridge, UK.

Mr Huynh presented his preliminary findings to classify ME/CFS from healthy controls using machine learning algorithms. He identified the best machine learning algorithm and key MRI features that distinguish people living with ME/CFS from healthy controls.

This presentation reflected NCNED’s ongoing commitment to improving understanding of neurological features associated with ME/CFS and fostering innovative machine learning strategies in the field.

Best wishes,
Sonya and the NCNED team

NCNED would like to express our gratitude and appreciation to all the volunteers, Support Groups and the following Organizations:
• The Stafford Fox Medical Research Foundation
• National Health and Medical Research Council
• MERUK
• Dr John Hamwood
• The McCusker Charitable Foundation
• Mr Adrian Flack
• Talei Stewart
• The Alison Hunter Memorial Foundation
• The Buxton Foundation
• The Henty Community
• The Blake Beckett Foundation
• Change for ME Charity
• QLD ME/CFS/FM Support Association
• WA ME/CFS and Lyme Association
• Fibromyalgia ME/CFS Gold Coast Support Group Inc
• Tweed ME/CFS/FM Lyme Support Group
• ME/CFS South Australia Inc
• ME/CFS & FM Association NSW Inc
• ME/CFS Australia Ltd
• National Advocacy Advisory Council for ME/CFS

Griffith University, Griffith Health, , , , , , , , , , , , , , , , , , , Tom Kindlon's ME CFS & related page: News, Research and more, ME/CFS Australia, ME Australia, ME CFS and Lyme Association of WA, ME/CFS/FM Support Association QLD Inc, Fibromyalgia me/cfs Gold Coast Support Group Inc., Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia, My QoL, ME/ CFS South Australia Inc, Myalgic Encephalomyelitis Group Australia Ltd, Australian National Advisory Advocacy Council for ME/CFS Research - NAAC, Chronic Fatigue Syndrome & Fibromyalgia NSW, Australia, ME Research UK, Me/cfs San Diego, Myalgic Encephalomyelitis M.E Chronic Fatigue Syndrome CFS Science, Leeds ME Network, Stichting ME Research, Bristol ME Support Group, Oxfordshire ME Group for Action, ME Long Covid unite SA, May 12th International ME CFS FM Awareness Day Australia, FJD/Robotech Robot line markers Australia

26/05/2026

FYI 🌻

In order to advocate for Assistive Technology (AT) for complex and not well understood disability like Myalgic Encephalomyelitis (ME), supporting evidence backed with journal publications could be a powerful skillset for successful AT request.

Clare can make the journey a little fun with uplifting and eye opening discussion with your peer Occupational Therapist.



Note:
Just realised this session was this morning. 😅
Follow Your OT Tutor to find out what was discussed during the session.

They usually share the recordings for members as on demand CPD.

JOURNAL CLUB – Overcoming barriers to assistive technology use

Occupational therapists play an important role in prescribing assistive technology (AT), but do you know how to effectively support clients through concerns about stigma, the views of others, and the psychological acceptance of needing AT?

Are your AT prescriptions supporting long-term self-management, or just focusing on short-term goals?

Knowing how to prescribe AT is one thing, but what systems do you currently have in place to ensure routine follow-up after a device is delivered, and what strategies do you use to keep your own AT knowledge current?

In the next Your OT Tutor Journal Club session, we’ll be reviewing the barriers to using assistive technology for individuals with chronic conditions. We’ll hear about what the research evidence is telling us, then chat about how we can apply it in our everyday practice. It will be applicable to those working in both community and hospital settings.

The sessions are running on Tuesday 26th May at 9.30am and 1.00pm (AEST). They will be recorded but you’ll get much more out of it if you come live and join the discussion.

To come along you’ll need to be a YOTT Journal Club member. For only $47 you get 12-months access to the on-demand library (with 20+ other recorded sessions) and you’ll be invited to 5 live sessions over the 12-month period.

Or if you’re looking for even more CPD options, become a YOTT Alliance or YOTT Connector member and you’ll be able to access the journal club as a free bonus!

Find out more here: https://yott.au/journalclub