Australia: News from Griffith University, National Centre for Neuroimmunology and Emerging Diseases (NCNED)

From MEAssociation Newsletter


MAJOR RESEARCH GRANT TO LOOK AT LINK BETWEEN LONG COVID AND ME/CFS

Griffith University’s research into the potential overlap between Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has received a major boost thanks to a AUS$6.4 million (£3.5 million) grant from the Stafford Fox Medical Research Foundation.



Russell Fleming from the ME Association comments: "This is welcome news. If only similar trials could be commissioned in the UK. We might then be able to quantify and understand the pathological overlaps between ME/CFS and Long Covid and whether repurposed drug treatments are useful to both. ME/CFS and Long Covid could affect more than 2 million people in the UK."

READ MORE full article from Griffith included

 

We could titrate doses while remaining blinded, at least in theory. Let people change their nominal dose but not tell them whether it's real or not.

 

Merged thread.

Australia: Alison Hunter Memorial Foundation: supporting biomedical research into Myalgic encephalomyelitis/Chronic fatigue syndrome ME/CFS

I don't know anything more about this charity; the website doesn't seem to have been updated for a while.

https://www.ahmf.org/aboutus.html

 

Announcement:
The Alison Hunter Memorial Foundation (AHMF) has operated as a non-profit institution from 1998 to 2014, to advance scientific knowledge and medical care.
The Board of AHMF is delighted to announce the formal establishment of a partnership with the National Centre for Neuroimmunology and Emerging Diseases (N.C.N.E.D.) at Griffith University, Queensland.

The team at Griffith University led by Professor Sonya Marshall-Gradisnik is undertaking vital immunological and genetic research.

The AHMF is therefore ceasing operation as an institution with independent charity status.
The focus of the AHMF will now be to support the groundbreaking research being carried out at N.C.N.E.D.

Donations in the future should therefore be directed to: 'Griffith University, National Centre forNeuroimmunology and Emerging Diseases (AHMF)'

https://www.ahmf.org/index.html

 

article in Ausdoc
A key to a ‘faulty’ lock: Why Aussie researchers are excited about naltrexone for CFS

https://www.ausdoc.com.au/news/a-ke...archers-are-excited-about-naltrexone-for-cfs/

 

Merged thread

Podcast: Ion Channelopathy: The Important Scientific Clue in CFS with Prof. Sonya Marshall-Gradisnik

https://www.ivoox.com/ion-channelop...ic-clue-in-cfs-audios-mp3_rf_113462049_1.html

 

National Centre for Neuroimmunology and Emerging Diseases - NCNED


NCNED is pleased to announce 3 new The Brotchie-Wallace Stafford Fox Medical Research Foundation PhD Scholarships. There are two immunological and one neuroimaging Scholarship available – please see further information in the links below:
https://www.griffith.edu.au/researc...elitischronic-fatigue-syndrome-and-long-covid
https://www.griffith.edu.au/researc...-channel-disturbances-in-mecfs-and-long-covid
https://www.griffith.edu.au/researc...neuroimaging-research-in-mecfs-and-long-covid
Submissions close on 15 February.
Best wishes,
Sonya and the NCNED Team

 

NCNED will be starting our Low Dose Naltrexone Clinical Trial for Long COVID patients very shortly. Please find further information about the trial attached below.

If you are interested in participating please call (07) 56789283 or email ncned@griffith.edu.au

Best wishes,
Sonya and the NCNED Team

Looks like this is Australia-wide as no need to travel to a research site

 

Merged thread

Health outcomes for Long COVID are comparable with ME/CFS
https://news.griffith.edu.au/2024/03/15/health-outcomes-for-long-covid-are-comparable-with-me-cfs/

People with Long COVID in Australia have poor health outcomes that are comparable with another emerging disease known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), new Griffith University research has discovered.

PhD student Breanna Weigel from Griffith’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) will be presenting the findings in Singapore this month at the International Public Health Conference.

Ms Weigel said the study found people with Long COVID have the same health outcomes as ME/CFS over a 12-month period.

“Quality of life and disability scores were significantly poorer for both Long COVID and ME/CFS when compared with healthy people,” she said.

“However, there were no differences between ME/CFS and Long COVID groups which indicates considerable reductions in functional capacity and health and well-being among people living with these illnesses.”

The research found only a few differences in more than 25 different symptoms between Long COVID and ME/CFS participants.

Importantly, both ME/CFS and Long COVID groups had comparable prevalence with the severity of their illness.

Both groups over time had the same symptom presentation of significantly impaired cognition, mobility, bodily pain, and post-exertional malaise (PEM) which means symptoms get worse after physical or mental activity.

PEM is very disabling and causes changes in symptoms and a further reduction in ability to do everyday activities.

Director of the NCNED, Professor Sonya Marshall-Gradisnik, said: “This research highlighted the continued impact of Long COVID on peoples’ lives, which is especially poignant as today we recognise International Long COVID Awareness Day.”

“The research forms one of many Long COVID investigations and clinical trials being undertaken at the national centre where it is hoped these findings will provide pathways for those with Long COVID.

“We are uniquely positioned nationally as we are the only centre to undertake scientific laboratory and MRI research in Long COVID and ME/CFS in tandem, and monitor the health and economic impact of the patients.

“At the national centre we also undertake clinical trials and contribute to best practice guidelines such as the recently published guidelines in the British Medical Journal for ME.”

Dr Natalie Eaton-Fitch, who was an undergraduate student at Griffith University and is now an emerging researcher at the NCNED said: “Researchers are very fortunate to have wonderful opportunities at all stages of their careers and to know research can make a real-world difference for people.”

Ms Weigel’s work builds upon the Issues Brief she did in collaboration with the Deeble Institute that reported how patient experiences can guide the development of Long COVID health policy.

 

Emerging??? This is from a PhD student who should have researched her subject better.

 

But ME/CFS isn't an emerging disease. It has been around for ever.

 

It's really starting to feel like M.E is an afterthought disease.

 

This is discussed in this ABC article
Queensland's CHO believes the symptoms of long COVID are real — but he wants people to stop calling it that
https://www.abc.net.au/news/2024-03-16/queensland-chief-health-officer-long-covid/103594020

 

A Griffith University research team has successfully applied for a $438,000 ME Research UK grant to track the progression of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

https://news.griffith.edu.au/2024/04/11/me-cfs-progression-in-focus-with-438000-grant/

A Griffith University research team has successfully applied for a $438,000 ME Research UK grant to track the progression of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The study will use an ultra-high field 7 Tesla (7T) MRI to capture a clearer depiction of brain regions and detect subtle brain changes in ME/CFS patients.