Myalgic Encephalomyelitis Group Australia Ltd

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

26/05/2026

Potentially the pathology that could explain all ME impairments and symptoms. 🎖️🌻💙

𝗖𝗼𝗻𝗴𝗿𝗮𝘁𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀!!

Chandi Magawa and the NCNED team are thrilled to announce the submission of a novel and innovative PhD thesis that pushed the boundaries of ion channel research in ME/CFS and long COVID.

Chandi’s PhD research was the first to identify distinct TRPM3 isoforms in NK cells from both healthy controls and people with ME/CFS. Our previous research has documented genetic and functional changes in TRPM3; however, TRPM3 doesn’t appear as just one version of itself, and these different versions are called isoforms. Each isoform may work differently which may be clinically relevant to disease pathology. Chandi’s research is significant to not only understand the pathomechanisms of illness, but also to contribute to NCNED’s research on biomarker development for diagnosis and treatment.

This thesis also documents novel insights into TRPM3 ion channel function that has never before been investigated. We know from previous research that TRPM3 ion channel function is reduced, leading to decreased calcium entry into cells of people with ME/CFS and long COVID. An innovative research project using live cell immunofluorescent imaging enabled comprehensive research into whether TRPM3 dysfunction resulted in impaired calcium entry into components known as organelles within the cells. Previous research has suggested that ME/CFS is a potential mitochondrial disease; however, this research project demonstrates that mitochondrial disturbances are instead linked with changes in calcium through TRPM3.

Sonya and the NCNED team congratulate Chandi Magawa on this incredible achievement and for the significant contribution to advancing our understanding of ME/CFS and long COVID.

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, May 12th International ME CFS FM Awareness Day Australia, FJD/Robotech Robot line markers Australia

26/05/2026

🎖️🙏🌻💙

𝗖𝗼𝗻𝗴𝗿𝗮𝘁𝘂𝗹𝗮𝘁𝗶𝗼𝗻𝘀!!

Chandi Magawa and the NCNED team are thrilled to announce the submission of a novel and innovative PhD thesis that pushed the boundaries of ion channel research in ME/CFS and long COVID.

Chandi’s PhD research was the first to identify distinct TRPM3 isoforms in NK cells from both healthy controls and people with ME/CFS. Our previous research has documented genetic and functional changes in TRPM3; however, TRPM3 doesn’t appear as just one version of itself, and these different versions are called isoforms. Each isoform may work differently which may be clinically relevant to disease pathology. Chandi’s research is significant to not only understand the pathomechanisms of illness, but also to contribute to NCNED’s research on biomarker development for diagnosis and treatment.

This thesis also documents novel insights into TRPM3 ion channel function that has never before been investigated. We know from previous research that TRPM3 ion channel function is reduced, leading to decreased calcium entry into cells of people with ME/CFS and long COVID. An innovative research project using live cell immunofluorescent imaging enabled comprehensive research into whether TRPM3 dysfunction resulted in impaired calcium entry into components known as organelles within the cells. Previous research has suggested that ME/CFS is a potential mitochondrial disease; however, this research project demonstrates that mitochondrial disturbances are instead linked with changes in calcium through TRPM3.

Sonya and the NCNED team congratulate Chandi Magawa on this incredible achievement and for the significant contribution to advancing our understanding of ME/CFS and long COVID.

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, May 12th International ME CFS FM Awareness Day Australia, FJD/Robotech Robot line markers Australia

17/05/2026

Many of you have raised concerns with me and my team about the major changes to the NDIS recently proposed by the Albanese government. With the legislation introduced just last week - and likely to be pushed through Parliament next week - I’m worried there won’t be enough time for proper scrutiny or amendments.

So, this week I’ll be hosting two community consultation sessions; one online and one in person, so you can share your views. Whether you’re a participant, family member, or provider, your voice matters and you deserve to be heard.

If you can't make it to these sessions, I'd really value your feedback by email. I'll also be putting aside time for phone calls with constituents during the week.

Online session: 18 May, 5:15pm - 6:15pm
In person session: 19 May, 5:15pm - 6:15pm Meeting Room 1, Camberwell Library, 340 Camberwell Road
RSVP: https://www.moniqueryan.com.au/events
Email: [email protected]

17/05/2026

🙏💙

16/05/2026

We know it can be life changing whn (OT) listens what are barriers and challenges for to live everyday life and be part of community.

When (AT) truly “assist”, it would give us sense of achievement and hope for the future.

But…, it’s easy to fall for a not-so-helpful AT.
That could potentially cause more barriers and challenges to pwME.

We hear a lot about pwME denied their requests for wheelchair.
It is a great AT to conserve energy for pwME and prevents further deterioration.

Also pwME are shy about using wheelchair.

In our humble opinion:
* OT could advocate for importance of wheelchair for pwME based on evidence and lived experiences.
* OT could encourage and educate pwME how to use it and when to use it.
* OT could evaluate the value and improved quality of life since the introduction of AT. Or identify further barriers and challenges when it’s not fulfilling the purpose for the prescription. (And if it was an unsuccessful outcome, we think peers and community would like to know about it to prevent them falling into the same mistake.)

As a laypeople, we are curious to know what kind of literature and evidence they will be discussing. 🤓💙🌻

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