ME Long Covid unite SA

07/08/2026

𝗦𝗘𝗩𝗘𝗥𝗘 𝗠𝗘 𝗔𝗪𝗔𝗥𝗘𝗡𝗘𝗦𝗦 𝗗𝗔𝗬 – 𝟴 𝗔𝗨𝗚𝗨𝗦𝗧 𝟮𝟬𝟮𝟲

On Severe ME Awareness Day, we stand with the entire ME/CFS community, acknowledging the challenges faced across all levels of illness severity, while drawing attention to people living with severe ME/CFS.

At NCNED, our commitment to research is driven by the people behind the diagnosis. Every patient has a story, a family, aspirations and a life that deserves to be lived to its fullest.

NCNED remain dedicated to advancing research that will lead to better understanding, improved diagnosis and effective treatments for ME/CFS.

To everyone living with ME/CFS: we see you, we are thinking of you and we are inspired by your strength and resilience. Your experiences remain at the heart of everything we do and your courage continues to motivate us in our pursuit of the research and breakthroughs needed to improve lives.

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

07/08/2026

1) 🇺🇸 A new NIH study argues that the fatigue experienced by ME/CFS patients likely has a central (in the brain) rather than a peripheral (in muscle) origin.

They put patients in an MRI scanner and recorded electromyography during grip strength exercises.

A brief breakdown.

2) All participants had to squeeze a grip device at 50% of their maximal force: 30 seconds of squeezing, 30 seconds of rest, repeated multiple times to generate fatigue.

Fatigue was defined as no longer being able to generate the target force.

3) Fatigue occurred earlier in patients (around block 5) than in controls (at block 12).

Patients were put inside an MRI to measure brain activity during the grip tasks. The researchers also measured electrical activity in the brain (EEG) and muscles (EEG).

4) The authors used the Dimitrov index as a measure of muscle fatigue. It reflects a shift from high frequencies toward low frequencies in the electrical signal.

The controls had the expected increase in the Dimitrov index, while ME/CFS patients did not.

5) The brain results show a similar picture: the controls had an increase in EEG power and blood oxygenation during the task, while ME/CFS patients did not.

6) There was also a measure called corticomuscular coherence (CMC), which indicates how muscle and brain are in sync. The efferent direction (brain -> muscle) had no group difference, while the afferent direction (muscle → brain) rose in controls and stayed flat in patients.

7) According to the authors, these results show that the fatigue of ME/CFS patients is central in origin: the brain and muscle activity associated with fatigue in controls was absent in patients.

They suspect something in the brain is inhibiting this and causing early fatigue.

8 ) Although the authors argue that "this lack of engagement is not conscious or deliberate" they mention fear of post-exertional malaise and elevated perceived exertion as potential mechanisms.

These are the same authors who published the controversial effort preference theory.

9) The main limitation of the study is the small sample size: only 15 ME/CFS patients and 11 were already in the intramural NIH study (so it's not an independent replication).

Would be interesting to do these tests in patients with muscle disease and depression as controls.

10) Link to the study:

Bedard et al. 2026. Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging.
https://www.sciencedirect.com/science/article/pii/S2213158226001002

07/08/2026

07/08/2026

Probably a little of both.
I remember an argument that all of a sudden while they were pointedly talking at me, I thought to myself how ridiculous it was and just started laughing. 😆
But humor is a necessity and will always get you through.

07/08/2026

All at once. 💙

07/08/2026

Niko is a photographer living with severe . Largely bedbound since 2022, he is too unwell to take pictures of other people, so turned the camera on himself. He chose to shoot in black and white to reduce the mental effort involved in his work, while also reflecting how life with severe can feel “figuratively and literally colourless”.



See Niko’s photography project and read more about him here:
https://nikosuvisto.com/enduring-life-with-severe-mecfs

He is also active on Instagram
https://www.instagram.com/nikosuvisto