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

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.

Continues here: https://app.secure.griffith.edu.au/...-bolster-efforts-of-griffith-cfs-researchers/

 

You know the way people complain when this group publicise and hype their findings - now you can see why they do it.

 

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.

 

I suppose politics is the answer of why this recently announced group have been formed separately, https://s4me.info/threads/me-cfs-di...-mdrn-australian-research-collaborative.7043/

 

Hi,

I asked Prof Don Staines about his background, stigma to the name ‘chronic fatigue syndrome’ in Australia and how far away are treatments and a test that GPs can use.

https://meaustralia.net/2019/01/24/meet-the-scientists-prof-don-staines/

 

Interesting read thanks.

 

Pity his responses were so shallow.

 

Vague

 

From Facebook post:

So I guess they're still hoovering up every last drop of funding available for ME in Australia.

 

A thread on the 2021 NCNED ME/CFS conference can be found here, National Centre for Neuroimmunology and Emerging Diseases ME/CFS conference, Griffith University, Australia, 2021

 

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."

 

Keeping us in suspense? It's something with ion channels, which do all sorts of things. Hope it'll be out soon!

 

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

https://news.griffith.edu.au/2023/0...grant-to-help-me-cfs-and-long-covid-research/

 

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.