New Zealand: Dysimmune Research - research organisation, Anna Brooks

Hutan

Hutan

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https://www.dysimmune.nz/
Crowd-Funded Research into Long Covid, ME/CFS & Other Post-Viral Illnesses
Hosted at the University of Auckland

Immunologist Anna Brooks is the Principal Investigator. Other co-founders have lived experience of ME/CFS and Long Covid. With the people involved, I think we can feel confident that there won't be any BPS nonsense. The website content reads well.

There's an exciting opportunity here to direct donor funds to something useful, and for collaborations with overseas investigations.

They are currently recruiting for one study:
Researchers at The Universities of Auckland and Otago are currently recruiting for a study to investigate immune and molecular markers following COVID-19 (healthy controls and Long COVID) and COVID-19 vaccination.
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Edit: Previously the organisation was called Post-Viral Research Aotearoa. the link to the website has been updated
 
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I signed up for this study. There were a few slightly ambiguously worded questions but not in any way in a psychosomatic red flag sort of way, just ordinary screening questions not tested sufficiently on outsiders to check for potential ambiguities. Just a minor nuisance issue and easily resolved by asking the very responsive team for clarification.

As someone not living near a testing center I'm hoping they can get their planned home collection kits up and running. I think this is contingent on funding.

That's my biggest worry re this research, that insufficient funding will force them to reduce the scope of the study - cohort size, number and type of tests run, etc - to such a degree that any findings will be weak. I hope that won't be the case but crowdfunding this sort of thing isn't easy

I also made a small donation but if anyone reading this with much deeper pockets could reach into them, like reeeeal deep...
 
DysImmune Research announces Health Research Council health delivery activation grant.

The grant is for us to seek partnerships and lay out the feasibility of our research, which is aimed at utilising complex technologies to develop clinically actionable diagnostic tools for Long Covid, and other post-acute infections.
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On top of Dr Brooks’ cytometry expertise, we have had Professors Jeremy Nicholson and Julien Wist at Murdoch University in Perth sign on with us as investigators for this proposal […] their immunometabolic tools hold promise both in uncovering a biomarker for Long Covid, and helping to identify other onset post-COVID risks, such as diabetes and heart disease.
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More at https://www.dysimmune.nz/health-research-council-grant-announcement/
 
SNT Gatchaman said:
Anna Brooks and Rohan Botica in a Liggins Institute public lecture a couple of weeks ago. Targeted to a lay audience.
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Yes, very much aimed at a very lay audience. Members here are unlikely to learn anything new. Anna lists a few of the LC hypotheses floating around but the key take-away is that there are many more questions than answers and that she wants to help find some of the answers but $$$. Would be nice if someone in the audience with deep pockets took note

Rohan filled the lived experience slot and it’s always nice to get to know one of our advocates a bit better. But am I the only one who, when seeing a pwME & OI, wants to yell at the screen “don’t stand there, sit down!!!” Anyway, I hope he didn’t get (too much) PEM
 
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A participant in this study posted on FB today that the research team is still looking for more moderate / severe pwME/CFS. A limiting factor is that they need to be well enough to be able to get themselves to a blood collection point in Grafton close to Auckland City hospital. Once there apparently access is fairly easy and a parking spot can be arranged

Link to the study
Investigating alterations in the expression of small RNA molecules (miRNA) in ME/CFS (and Long Covid-ME/CFS)

by Anna Brooks | Feb 1, 2025 | International collaborations

Collaborator team: Principle Investigator Dr Sarah Annesley (La Trobe University) and co-chief investigators Dr Lesley Cheng (La Trobe Institute for Molecular Sciences) and co-chief investigator Dr. Anna Brooks (Liggins Institute, University of Auckland)

I am excited to announce our first Trans-Tasman study that specifically aims to include patient cohorts from two geographical areas (NZ and Australia). Led by Dr Sarah Annesley (and her team Daniel Missailidis and Oana Sanislav. Our project aims to investigate alterations in the expression of small RNA molecules. It has been funded by The Judith Jane Mason & Harold Stannett Williams Memorial Foundation, more commonly known as The Mason Foundation (managed by Equity Trustees Limited). This funding will enable us to explore how viral infection, metabolism, and the protein kinase S6K influence these small RNA molecules. By combining miRNA profiling with immunometabolic analysis, we aim to uncover deeper insights into the molecular mechanisms driving ME/CFS and identify potential biomarkers for the disease. The study will largely be undertaken in Australia, however we will be contributing samples and expertise for the immunometabolic assays. We look forward to working with this highly regarded team!!
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This patient info sheet looks very good. I have never seen such a thorough explanation of all that happens with the data collected. It is also the 1st research I saw - able to give you some of your own results.

And it explains some provision to take smaller samples in your home.
Due to the small blood sample size from finger pricks or upper arm capillary sampling, these tests may only be used for limited aspects of the study, for example for detecting antibodies/proteins and some immune cell studies.

Finger-pricks samples: In some cases, finger-prick blood sampling will be offered (for example, if you cannot donate blood due to alert level restrictions) using at-home sampling kits. These can then be returned to our lab by post....

Upper arm capillary blood sample: Another type of blood draw device will be offered to enable at-home sampling, or when only small volumes of blood (1/2 a ml) are required. ...

Saliva: We may ask if you would like to provide a saliva sample which is a less invasive way of providing samples to measure proteins for some of our tests.
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Plus:

If you want to talk to someone about any Māori cultural issues you may have about this project, you can contact...

If you want to talk to someone about any Pacific Health and cultural issues you may have about this project, you can contact....

You can also contact the health and disability ethics committee (HDEC) that approved this study on: Phone...

If you want to talk to someone who isn't involved with the study, you can contact an independent health and disability advocate on...
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I agree, that is a really good patient information sheet. Is it built on a standard Auckland University template?

If you want to talk to someone about any Māori cultural issues you may have about this project, you can contact...
If you want to talk to someone about any Pacific Health and cultural issues you may have about this project, you can contact....
You can also contact the health and disability ethics committee (HDEC) that approved this study on: Phone...
If you want to talk to someone who isn't involved with the study, you can contact an independent health and disability advocate on...
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That in particular is very impressive. I didn't know that the independent health and disability advocacy service had advocates available to talk through a study with people, but I'm glad I do now. And it's great that there is a contact number for the ethics committee that approved the study.

Thanks @bicentennial for highlighting this.
 
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