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

H

hixxy

Senior Member (Voting Rights)
Edit: This thread includes several other threads merged with it.

Some earlier threads on this team's work:

The Courier Mail: Australian scientists prove CFS is real and have discovered a test for it
Dec 2017 to Jan 2018

Don Staines and Griffith
Aug 2018

Australia - Parliamentarians learn about ground-breaking science on debilitating neurological disease
Aug 2018

ABC: Your disease is real:Breakthrough in diagnosis of chronic fatigue syndrome
August 2018
_____________


Generous $2m donation to bolster efforts of Griffith (NCNED) CFS researchers

NCNED still managing to mop up every last drop of research funding for ME/CFS in Australia and have very little interesting to show for it.

The opening address at an international conference on Chronic Fatigue Syndrome marked the announcement of two funded professorships for Griffith researchers worth more than $2 million.

Stafford Fox Medical Research Foundation trustee Paul Brotchie announced the funding of two full Professorial Research Fellowships for four years at the 2018 National Centre for Neuroimmunology and Emerging Diseases Research, Innovation and Discovery CFS/ME International Conference held at Crowne Plaza on the Gold Coast.

The fellowships were bestowed to Co-Directors of Griffith’s NCNED Menzies Health Institute of Queensland Professors Sonya Marshall-Gradisnik and Donald Staines for the advancement of biomedical and clinical research into the treatment of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME).
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Continues here: https://app.secure.griffith.edu.au/...-bolster-efforts-of-griffith-cfs-researchers/
 
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International Consortium for research into CFS/ME announced at NCNED Conference.

Australia’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) announced at its recent International Conference on Research, Innovation and Discovery, the establishment of the Consortium Health International for ME (CHIME).

This Consortium consists of multi-site, multi-national collaboration with NCNED across Australia, United States of America, United Kingdom, New Zealand, Poland, Germany and Japan to undertake research investigations into diagnosis, treatment, epidemiology/demographics and health services delivery for CFS/ME.

It is intended the CHIME Consortium will provide an international reference point for CFS/ME research worldwide. CHIME aims to create transformational change in how CFS/ME is diagnosed and treated by establishing a clear nexus between pathomechanism discovery, development of a screening/diagnostic test, and drug development and/or repurposing which will be applied in revised clinical guidelines internationally.

Enhanced epidemiological surveillance and demographic understanding of the illness will be expanded in the context of health services planning and utilisation in CFS/ME. This approach will enable a more standardised approach to these elements of CFS/ME research and treatment world-wide.

Best wishes,
NCNED Team
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Code: 
https://www.facebook.com/permalink.php?story_fbid=1450844668381326&id=301252900007181

 
Could go one of two ways I suppose. The partners in this might encourage NCNED to raise their standards, or they'll follow NCNED's lead - it will certainly be interesting to find out who they are working with in the UK.

And interesting to see all the 'ICC is the one true definition' posts underneath the post as well.

ETA: And I do wish that NCNED would use ME/CFS instead of CFS/ME.
 
On the NZ front, I see Dr Eiren Sweetman was attending the conference from the University of Otago team (Professor Tate). It makes sense that this group signs on to CHIME. It's a small group and it must be hard to build momentum unless working fairly closely with other teams.

I think the CHIME consortium probably isn't a bad thing. I don't think we should assume that the members necessarily agree with NCNED research findings. Communication between teams, especially with teams from non-English speaking countries, will hopefully be helpful.
 
From Facebook post:

Congratulations to the NCNED researchers who were recently awarded three Mason Grants:

- International Consortium: Impaired Ion Channel Function in the Pathomechanism and Pharmacological Treatment of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). Chief Investigators: Professor Sonya Marshall-Gradisnik, Professor Donald Staines, Professor Katsuhiko Muraki & Dr. Helene Cabanas.

- A Multimodal Neuromarker of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Chief Investigators: Dr. Zack Shan, Dr. Leighton Barnden, Professor Donald Staines, Professor Sonya Marshall-Gradisnik, Dr. Richard Kwiatek & Professor Sandeep Bhuta.

- A Neurobiology Based Model of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome with Advanced Neuroimaging. Chief Investigators: Dr. Zack Shan, Dr. Leighton Barnden, Professor Sonya Marshall-Gradisnik, Professor Donald Staines & Professor Sandeep Bhuta.
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So I guess they're still hoovering up every last drop of funding available for ME in Australia.
 
Latest hype from Griffith/NCNED.

World first chronic fatigue syndrome findings could fast track response to Long COVID

"Griffith University researchers are hoping to find a treatment for Long COVID after proving the illness shares the same biological impairment as patients with Chronic Fatigue Syndrome (known internationally as Myalgic Encephalomyelitis (ME/CFS)).

In a world first, their study suggests COVID-19 could be a potential trigger for ME/CFS and their 10 years of research on ME/CFS could help fast track understanding and treatment of Long Covid.

Griffith University’s National Centre for Neuroimmunology and Emerging Diseases Director, Professor Sonya Marshall-Gradisnik, said the breakthrough findings will assist with investigations into therapeutic strategies to help both Long COVID and ME/CFS patients."

https://news.griffith.edu.au/2022/0...ings-could-fast-track-response-to-long-covid/

The study hasn't been published yet....
"The breakthrough findings will be published in the renowned international Journal of Molecular Medicine."
 
Andy said:
Latest hype from Griffith/NCNED.

World first chronic fatigue syndrome findings could fast track response to Long COVID

"Griffith University researchers are hoping to find a treatment for Long COVID after proving the illness shares the same biological impairment as patients with Chronic Fatigue Syndrome (known internationally as Myalgic Encephalomyelitis (ME/CFS)).

In a world first, their study suggests COVID-19 could be a potential trigger for ME/CFS and their 10 years of research on ME/CFS could help fast track understanding and treatment of Long Covid.

Griffith University’s National Centre for Neuroimmunology and Emerging Diseases Director, Professor Sonya Marshall-Gradisnik, said the breakthrough findings will assist with investigations into therapeutic strategies to help both Long COVID and ME/CFS patients."

https://news.griffith.edu.au/2022/0...ings-could-fast-track-response-to-long-covid/

The study hasn't been published yet....
"The breakthrough findings will be published in the renowned international Journal of Molecular Medicine."
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The pilot study, on 5 ME/CFS patients, 5 Long Covid Patients and 5 controls, that this hype is built on can be found here, Transient receptor potential melastatin 3 dysfunction in post COVID-19 condition and ME/CFS patients 2022, Martini Sasso et al
 
Largest medical research grant to help ME/CFS and Long COVID research
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 $6.4 million grant from the Stafford Fox Medical Research Foundation.

The funding injection will be used by Griffith’s internationally renowned National Centre for Neuroimmunology and Emerging Diseases (NCNED) at the Menzies Health Institute Queensland.

Chief Investigator Professor Sonya Marshall-Gradisnik said: “We are thrilled with this successful outcome as this grant provides the foundation to further our novel scientific discoveries of the pathology of ME/CFS as well as now explore the potential similarities with Long COVID.”

“The research funding also provides for a clinical trial using identified pharmacotherapeutic targets and the registered drug, low dose naltrexone (LDN), to be used in a clinical trial for both ME/CFS and Long COVID patients.

“The clinical trial will be conducted with participants from Queensland, New South Wales, and Victoria with recruitment of volunteers to commence in the coming months.

“The clinical trial will be undertaken with our long-term collaborators the World Health Organisation (WHO) Reference Laboratory, Australian Rickettsial Research Laboratory (ARRL), Geelong Hospital, and Barwon Health, Victoria.”
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https://news.griffith.edu.au/2023/0...grant-to-help-me-cfs-and-long-covid-research/
 
While I have reservations about NCNED (and awe at their ongoing ability to pull in funding), I think the Australia Rickettsial Research Laboratory and specifically the main person there, Professor Stephen Graves, is good, scientifically and for their concern about people with ME/CFS. It's a bit of a weird connection for an LDN study though.

I'm not sure about the 'WHO Reference Laboratory' - there are a network of reference laboratories rather than it being one thing.

I hope some members here will participate and let us know how the study is being done. Perhaps we should try to get hold of the protocol.
 
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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