Chris Armstrong - Melbourne ME/CFS researcher, research updates and general chat

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Dr Christopher Armstrong is an Australian scientist researching Myalgic Encephalomyelitis (ME). He moved to California late last year to take up a position at the Open Medicine Foundation.

Previously Dr Armstrong worked on biochemistry and molecular biology in the Bio21 Molecular Science and Biotechnology Institute at the University of Melbourne. He researched ME for eight years at the University of Melbourne, where he completed a PhD to pioneer the application of metabolomics.

We also talked about his community and political engagement:

“Patients have been patient for long enough.”

https://meaustralia.net/2019/02/20/meet-the-scientists-dr-christopher-armstrong/

 

"researchers to create surveys target specific participants", might have meant to be "researchers to create surveys targeted to specific participants" perhaps?

 

Do we have an email address for Chris @ OMF?

Thanks

 

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Listen to the full podcast here.

Uninvisible Podcast Episode #46 -Christopher Armstrong, PhD

https://www.omf.ngo/2019/10/31/christopher-armstrong-phd-speaks-out-on-uninvisible-podcast/

 

Have listened to this now. Nothing really new, apart from Chris' background of which I was unaware, but a nice, thoughtful and wide-ranging discussion.

https://uninvisiblepod.com/2019/10/30/episode-46-chris-armstrong/

 

For those who prefer reading to listening: I was happy to read on the podcast webiste:

 

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https://www.youtube.com/watch?v=JuKPJTenDm0

 

That was an interesting presentation. Except that it didn't make clear which projects were just a plan and which were actually happening.

So I looked on the website (https://www.omf.ngo/omf-australia/) and it looks like the only study currently underway is the Ocular Motor study (confusingly with a wrong blurb on the intro page). Unless the website is not up to date, all the other OMF Australia studies seem to be still at various stages of planning.

The ocular study discussed in the video is progressing though:

https://www.omf.ngo/ocular-motor-study/

 

OMG Financials show 3 of the studies received OMF funding in 2021

https://www.omf.ngo/wp-content/uploads/2022/05/2021-OMF-Audited-Financial-Statements.pdf

 

I think generally we see that 99% of studies are looking to compare ME/CFS and healthy patients to find a marker that is distinctly different in 90%+ ME/CFS patients as compared to the healthy controls. And this is a tempting route to go down. The idea is that this whole research field is held back without that pathology or biological anomaly that defines the disease. You find the biological difference and then build everything off that: characterisation studies, treatments to correct the pathology, diagnostics that are surrogate markers for the pathology or early markers of the pathology, etc.

Patients and researchers all get excited at the idea of looking at something completely different because it could be the marker we've been waiting for. There is a big push to just keep digging like this and I completely understand why that is. There is less excitement to go back and look at some of the pathology treatments present in 30-50% of patients to understand them and their contribution to the disease. The direct outcome of this research does help the 30-50% of patients with that pathology but there are indirect outcomes that get overlooked. The indirect outcome is that once you characterise a pathology nested in the disease, then you can start to build off that and extrapolate to mechanisms that may be universal without that exact pathology. I think this is a smarter investment of time but it's very much chipping away at the problem rather than looking for a magic bullet.

 

Arguably a biomarker would make it easier for family doctors to make a diagnosis and for patients to get a clear diagnosis without having to jump so many hoops. Legitimizing the disease in a hostile health care system is important.

Thank you for your work. Will take anything by now. It’s been 15+ years for me.

 

Yes exactly. This is why it's been such a dominant type of research in the field. We still do this type of research. Have explored a diagnostic in the past (am even doing it currently) and it's incredibly hard to get up but not impossible. If you don't know that the marker is tied to the disease mechanism then you have to prove its diagnostic ability against more than healthy, has to be able to distinguish MECFS from many other diseases to be diagnostic of MECFS.

Best bet might be a marker that enhances existing criteria to simplify it. The complexity of current diagnosis lies in the exclusion of other diseases.

The recent paper on Raman separating ME from MS was a good start in the right direction. That has potential worth watching. Also consider the diagnosis of pathologies in MECFS (POTS and preload) there's a lot of value to that too.

 

Hello @MelbME

Welcome to this forum. I hope that OMF can focus on trialing serious treatments (i.e. NOT LDN) instead of funding basic/exploratory research.

Why? Because basic/exploratory research has not yielded any particularly significant/useful results over the past several decades. Therefore continuing to pursue basic research may not be fruitful.

So please let’s fund platform trials with cyclophosphamide (phase 3), daratumumab, alemtuzumab (campath), CAR T cell therapy, etc. I am optimistic that something will work.

Thank you for your consideration.

 

If you have unlimited funding, then by all means pursue both. But you don’t. Personally I am much more interested in getting better than elucidating the exact mechanism by which the disease operates.

 

LIFT trial is a combination therapy of LDN+Mestinon that they want to assess long-term, they need to show each LDN and Mestinon alone as well to see if the combination therapy is better than both individually. It has a lot of support from clinicians based off their experience. Of course this isn't going to help everybody and I understand the frustration.

What is your interest in immune modulator treatments based on? Did they help you?

 

Find it so interesting that clinicians talk up LDN and mestinon.. Have never spoken to a patient where either help primary ME symptoms, and most anecdotal online reports are negative.. Neither have helped me (Nor saline nor abilify). I think a lot of patients claim something helps them but are being overly optimistic. Inevitably I see then those same people still just as sick a few years later and not on the treatment they said was helping them.

 

I have found LDN helpful, and have taken it for a few years now. Of course it could be placebo, but I have tried plenty of drugs and its the only one I still take. Its also hard to know what treatments to test without a better understanding of what is causing the issues. Why try specific immunotherapies when these drugs have significant side-effects and we do not have any indication they would be helpful? I think it would be more problematic if these therapies were run and failed (which seems likely) as this could play into the BPS narrative. Wouldn't you think that if these drugs were the answer we would have found some evidence to justify their use by now?