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
 
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Jonathan Edwards said:
A number of people will be pleased if another LDN trial is set up. I understand there is already on in Canada for Long Covid. There is enough interest to jutify trying to get a clear answer, even if the science base is thin.

I hope the study uses adequate methodology. Studying LDN is tricky since the claim is that you need just the right dose and it is hard to do a double blind trial with 'just the right dose' placebo.

I was wondering whether one option would be to have four doses, covering the likely range, and to have patients try 'dose escalation' when one or more doses is real and others not.
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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.
About the Foundation
Mission - To reduce the impact in the community of the disease Mylagic Encephalomyelitis/ Chronic Fatigue Syndrome.

The Alison Hunter Memorial Foundation was established in 1998 through the initiative of the Public Interest Advocacy Centre, and The Public Interest Law Clearing House as a project of the law firm Minter Ellison.

The Foundation is an enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from complications arising from ME/CFS which included seizures, paralysis, gastrointestinal paresis and overwhelming infection resembling Behcets Disease. Such complications are rare and only present in a severe subgroup. Alison courageously fought ME/CFS for ten years and was an unstinting advocate for young people.

ali.jpg
Alison was the founding president of ME Young Adults (MEYA), established in 1992 at Royal North Shore Hospital, Sydney.

"It is imperative that children and adolescents with ME be empowered with decisions regarding their own health and capabilities. "
- Alison Hunter -
International Meeting on Chronic Fatigue Syndrome
18–20 May 1994 Dublin, Ireland

"Even the most understanding doctor becomes frustrated when tests repeatedly come back 'normal'. They cannot give us a pill to make it (and us) go away, and worsening health drives us back again and again in desperation to ask "Doctor, can't you do something??".
- Alison Hunter -
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https://www.ahmf.org/aboutus.html
 
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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
What does long COVID have in common with chronic fatigue syndrome?

First, there is the constellation of overlapping symptoms, including post-exertional malaise, brain fog, fatigue, gastrointestinal issues, palpitations and dizziness.

Then, there is the absence of an overarching treatment or cure.

But immunologist Professor Sonya Marshall-Gradisnik — who has been studying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for more than a decade and helped define the clinical criteria for the condition — has found another shared feature that could unlock a new treatment.

There is no known cause of ME/CFS, but impaired functioning of natural killer (NK) cells has been shown to be a consistent feature of this condition, says Professor Marshall-Gradisnik.

And her team at Griffith University in Brisbane have slowly been answering why.

Across numerous studies, they found that the ion channel receptors TRPM3 and TRPM7 — molecular ‘locks and keys’ that control the movement of calcium in and out of NK cells — malfunction in those with ME/CFS.

And when they looked at patients with long COVID, they found a similar malfunction in TRPM3 receptors.

“I am not saying that viruses are the cause; I am saying that the origin is potentially because these particular receptors are not firing to bring calcium inside the cell,” Professor Marshall-Gradisnik tells AusDoc.

Having identified the “faulty” mechanism, her team have also tested ways to fix it — including the use of low-dose naltrexone.

“We used naltrexone in the laboratory and found it indirectly acts on the key and opens the lock,” she says.

“It improved the influx of calcium inside the cells and made the lock restored in function.”

“That gave us the impetus to test low-dose naltrexone in a clinical trial and, hopefully, depending on the results, be able to use it for an intervention for ME/CFS.”

While low-dose naltrexone is sometimes prescribed off-label for patients with ME/CFS, the recent breakthroughs — along with results from small trials on long COVID — have provided hope that a validated treatment is within reach.

Professor Marshall-Gradisnik says the lock-and-key mechanism, which is also found on muscle cells, could explain why patients prescribed graded exercise therapy have poor outcomes.

“[If] you have not got enough ability to bring calcium inside the cell, then you are going to have problems with muscle contraction, relaxation, and that could then cause pain, which is what ME/CFS patients report.”

She adds that pacing activity, or working within a patient’s ‘energy envelope’, is now the preferred self-management option.

Although this is reflected in guidance in the US, the UK and even the state of Victoria, where health authorities no longer advise graded exercise therapy because of a lack of clinical evidence to support it, the RACGP is yet to catch up.
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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

Professor Sonya Marshall-Gradisnik is Director of the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Griffith University. She is an immunologist and recognized as the world leader in natural killer (NK) cell and ion channel dysfunction research for the identification of the pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long Haul COVID-19 through her pioneering technique of electrophysiology patch clamp.

Her discoveries are contributing directly to the development of a screening/diagnostic test and improved clinical guidelines and effective treatments for ME/CFS, including pharmacotherapeutics and drug repurposing. Professor Marshall-Gradisnik has achieved sustained success as an independent research leader through successful competitive grants, such as NHMRC and ME Research UK, and numerous philanthropic national and international grants of more than $15 million for over ten years. She has published over 115 scientific publications in the field of ME/CFS, graduated over 45 post graduate students and is an advisor to national and international agencies. Dr. Gradisnik is joined with her colleague Kay Schwarz.
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https://www.ivoox.com/ion-channelop...ic-clue-in-cfs-audios-mp3_rf_113462049_1.html
 
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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

https://www.facebook.com/NCNED/post...PPgxpsk8eAVG2mmwqsZLNi2wABHopiSqxJ61NPEeqGm3l
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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
https://www.facebook.com/NCNED/post...5dtFBv9Ye_aclLRTeZf-qoMjQN-laAuRb&__tn__=,O*F
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https://twitter.com/user/status/1760372036868649467
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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.
 
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John Mac said:
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.
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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

https://twitter.com/user/status/1769387883889135617
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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.

https://twitter.com/user/status/1779496093010534859
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National Centre for Neuroimmunology and Emerging Diseases - NCNED


a – r – @..

7 - : /
We are currently looking for a PhD candidate to develop neuroimaging methods to understand the pathophysiology of ME/CFS and long COVID in addition to characterisation of pharmacotherapeutic actions of repurposed pharmacotherapeutics during clinical trials.

This project focuses on mapping tissue microstructural changes using Quantitative Susceptibility Mapping (QSM) data in Healthy Control, ME/CFS and long COVID cohorts acquired from 7 Tesla MRI. These high spatial resolution data from a 7 Tesla research MRI are of exceptional quality and have the potential to provide unique insights into iron/myelin related pathophysiology in ME/CFS and long COVID. The successful candidate will work with national and international research groups and will have the opportunity to attend national and international conferences.

Apply here - https://jobs.smartrecruiters.com//GriffithUniversity/743999984424705-phd-scholarship-neuroimaging-research-in-me-cfs-and-long-covid

7 . - : /

The primary focus of this role is to contribute to growing knowledge on the pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

There are many hypotheses on the aetiology of ME/CFS. Immunological and ion channel disturbances play a crucial role in the pathophysiology of ME/CFS and long COVID. Investigating these disturbances through a multiomics approach aims to provide a comprehensive understanding of underlying molecular mechanisms.

This project will investigate transcriptomics, proteomics, metabolomics and epigenomics, whilst employing integrative pathway and network analyses.

Apply here - https://jobs.smartrecruiters.com//GriffithUniversity/743999980694545-phd-scholarship-immunological-and-ion-channel-disturbances-in-me-cfs-and-long-covid

: /

The primary focus of this role is to elucidate the role of transient receptor potential (TRP) ion channels in the pathophysiology of ME/CFS and long COVID and as a potential pharmacotherapeutic target for treatment. Further, the NCNED will embark on a clinical trial to assess the efficacy of repurposed treatments on TRP ion channel function. This role will also involve the collection of clinical data to determine therapeutic effects.

This project aims to utilise a multi-disciplinary approach to investigate both immunological and ion channel disturbances. This project will employ novel laboratory approaches, such as patch clamp electrophysiology, microscopy and flow cytometry, in addition to analysis and collection of epidemiological data.

Apply here - https://jobs.smartrecruiters.com//GriffithUniversity/743999980694955-phd-scholarship-myalgic-encephalomyelitis-chronic-fatigue-syndrome-and-long-covid
Best wishes,
Sonya and the NCNED Team
 
Moved post

Could a Widespread Ion Channelopathy be Causing ME/CFS, Long COVID and Gulf War Illness

Article by Cort Johnson on the Griffith University findings.

https://www.healthrising.org/blog/2...-chronic-fatigue-long-covid-gulf-war-illness/

"No group better illuminates this pattern than Sonja Marshall-Gradisnuk’s work with TRPM3 ion channels at Griffith University in Australia over the past 8 years. (The Griffith group works on other factors in ME/CFS as well.)
Since the publication of the first TRPM3 paper in 2016 (aptly titled “Novel identification and characterization of Transient receptor potential melastatin 3 ion channels…”), the group has published no less than 17 papers on the possibility that disruptions in the TRPM3 (and other TRPM ion channels) are contributing to ME/CFS.
While ion channelopathies were proposed to play a role in ME/CFS as early as 2000, it’s safe to say that TRPM3 channels were on no one’s radar before 2016."


So 8 years on and 17 papers later no one else has tried/been able to repeat their findings.
You think they would wait for independent confirmation before carrying on down this road.
 
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This is the whole problem with this field. No one ever tries to replicate anything. This could be huge or it could be nothing but without replication who can tell.

This is why I get so frustrated when people say there's currently nothing we could direct more funding at.
 
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