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

V.R.T. said:
No one ever tries to replicate anything.
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When it comes to Griffith University findings I do think several other groups have tried to replicate the findings but failed. Most notably the recent intramural study looked at NK cells without finding anything. Davis also looked at NK cells I believe, so did this study and this study, Klimas wrote a review on NK cells in ME/CFS more than 20 years ago: https://www.sciencedirect.com/science/article/abs/pii/S1529104901000472. They also produced further studies on this subject, such as https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0010817. The differences may be due to methodologies differing (the NIH assessed NK cell function using a Chromium release assay within 24 h of collection of the blood) or not.

V.R.T. said:
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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I usually feel similar. With this particular group, it appears they have gotten funding after funding for several years and they produce paper after paper. I would think that if they wanted others to investigate this, they'd probably just increase their sample size and improve their methodology (in the past there have been concerns about them not correcting for things, presenting no actual data, no statistical analysis, not presenting the full data etc), instead of publishing the same study over and over again and then arguably completely overhyping those papers with different quotes in the media.
 
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EndME said:
When it comes to Griffith University findings I do think several other groups have tried to replicate the findings but failed. Most notably the recent intramural study looked at NK cells without finding anything. Davis also looked at NK cells I believe, so did this study and this study, Klimas wrote a review on NK cells in ME/CFS more than 20 years ago: https://www.sciencedirect.com/science/article/abs/pii/S1529104901000472. They also produced further studies on this subject, such as https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0010817. The differences may be due to methodologies differing (the NIH assessed NK cell function using a Chromium release assay within 24 h of collection of the blood) or not.



I usually feel similar. With this particular group, it appears they have gotten funding after funding for several years and they produce paper after paper. I would think that if they wanted others to investigate this, they'd probably just increase their sample size and improve their methodology (in the past there have been concerns about them not correcting for things, presenting no actual data, no statistical analysis, not presenting the full data etc), instead of publishing the same study over and over again and then arguably completely overhyping those papers with different quotes in the media.
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Thanks, I wasn't aware of the replication attempts. I thought their theory had to do with ion channels or something? I am quite new to all this complicated cellular biology.

But yes it was more of a general frustration with underpowered studies and lack of replication in the field.
 
My issue with this group is that their work isn't improving. I first joined the other forum 11 years ago and have been seeing their methodologically inadequate and underpowered studies appearing ever since. Usually accompanied by huge hype from the authors, only to be forgotten in the bowels of Pubmed and never mentioned again.

EndME said:
instead of publishing the same study over and over again and then arguably completely overhyping those papers with different quotes in the media
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The academic publishing system is completely screwed up. There is an enormous focus on output and productivity at the expense of quality. In order to get grants on which you depend for survival, you have to show a constant stream of publications. This means that preliminary papers are rushed out instead of doing things properly. I don't know what the solution is.
 
Sid said:
The academic publishing system is completely screwed up. There is an enormous focus on output and productivity at the expense of quality. In order to get grants on which you depend for survival, you have to show a constant stream of publications.
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I annoyingly chime in with this occasionally, but: also something the software industry has mostly solved. It used to be that programmers were judged in terms of productivity by the lines of code they wrote. It's a complete dog shit measure, it doesn't relate to productivity at all.

Software development is a chaotic unlicensed industry. It has no central authorities outside of a few moments where standards are established. And we managed to do this precisely because when you underperform in a market profession, you just become irrelevant. You lose your lob. Your company goes bankrupt. And so on.

Academia needs a big reset. It has almost completely enshittified.
 
From their Facebook page. A link wasn’t posted.

Researchers at the NCNED are pleased to announce a “How-To” resource with Australian Doctor which is freely available to health practitioners in Australia.

This resource offers a comprehensive overview of the pathology, diagnosis, treatment, and prognosis for people with ME/CFS, offering valuable educational guidance to improve understanding and healthcare practices for those impacted by this condition.

At the NCNED, we are committed to advancing health practices and health outcomes for people with ME/CFS.

We were appreciative of this opportunity provided by Australian Doctor and aim to continue our work in hopes of improving access to healthcare for many Australians with ME/CFS.

Best wishes, Sonya and the NCNED Team
 
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From their Facebook page.


NCNED research fellow, Dr. Kiran Thapaliya, was invited to present at the “Mechanical Basis of ME/CFS, Focusing on the Brainstem and ME/CFS Part 2” event, organised by Renegade Research. In his presentation, titled “Imaging the Invisible: Multi-Modal MRI Reveals Brainstem Abnormalities in ME/CFS”, Dr. Thapaliya shared NCNED’s findings from 3T and 7T MRI studies that highlight brainstem impairments in both people with ME/CFS and people with long COVID.

The recording of Dr Thapaliya’s presentation can be accessed via the following link:

We are grateful for the opportunity to share our research with the broader scientific community and appreciate the insightful discussion that followed. A big thank you to the organisers and all the attendees.

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
• 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
• National Advocacy Advisory Council for ME/CFS
 
This came up in the search results when I was browsing for something else. The Australian government has released the document last week as a result of an FOI. It appears to be a record of emails between NCNED and the Australian Ministry of Health about the development of clinical guidelines. I haven't read it all.

https://www.health.gov.au/sites/def...pondence-regarding-me-cfs-recommendations.pdf

I don't think the NCNED people are appropriate people to be involved in the development of clinical guidelines.
 
I started from the end of the documents, don't ask me why.
Came across this self aggrandisement from Sonya Marshall Gradiznik

The National Centre for Neuroimmunology and Emerging Diseases (NCNED) employs a ME/CFS patient- researcher- clinician model, a unique model that has positioned us as the world leader in the field of ME/CFS and more recently Long COVID.
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Really?
 
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