Open Medicine Foundation (OMF)

Hutan said:
Underpowered studies have been suggesting possible biomarkers, so it will be good to get a decent sized study to attempt to replicate those findings. The devil will be in the detail of course
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Presumably they will have to look for finding see if they are there replicable though. So I guess I'd like more transparency on what findings they are trying to replicate.

It would be a shame for them not to look for a really important/interesting finding.
 
Trish said:
I'm much more likely to donate if there is clear concise information on past, current and future projects and how funds are allocated.
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Yep! Plus, I'm only likely to make repeat donations to charities that offer a clearly displayed opt-out on all further communication, right from the outset.

If I wanted to read their news I'd visit their website, and if I had spare cash I'd donate. In the meantime they should assume I don't have anything to give, or I don't want to be bugged, or both.
 
November 18, 2025

An Interview with Jonas Bergquist, MD, PhD, and Alain Moreau PhD

The Heart of the Matter
In an interview with Dr. Jonas Bergquist and Dr. Alain Moreau, two of OMF’s Directors, they talk about their main ideas behind ME/CFS, including an immune system that is too active in the brain and spinal cord, inherited factors, and how genes are expressed.

They then discuss connections between their research:

Moreau’s work found that a protein called SMPDL3B is different in people with ME/CFS. That protein can change cell membrane fluidity and influence a signaling pathway. These changes help contribute to the inflammation markers that Dr. Bergquist has found.

Dr. Bergquist measures the activity of a type of immune cell called microglia to identify inflammation in the nervous system. Microglia activity can be influenced by the protein haptoglobin and the hormone FGF-21. Dr. Moreau has found that these two molecules play a role in ME/CFS.
 
Sorry, I haven't made a comprehensive response to the video. I haven't got through much of it yet.

Ron talks about the co-opting of a zebra fish researcher who has been able to add a gene to zebra fish that keeps the itaconate shunt on. He says that fish with the itaconate shunt on swim less. They are testing drugs to see what improves the situation. I think the first step would be to confirm the hypothesis that this is actually the problem in ME/CFS. I guess Rob Phair is working on this, so perhaps they are doing that too.

Ron says JAK-STAT inhibitors have cured two people, but have not worked for others.
 
Hutan said:
I think the first step would actually be to confirm the hypothesis that this is actually the problem in ME/CFS. I guess Rob Phair is working on this, so perhaps they are doing that too.
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If they did this we would be in business! I wonder how complicated/possible it would be to prove or disprove.

@MelbME are there any patient studies in the works that could shed some light on whether the itaconate shunt is behind ME/CFS?
 
Hutan said:
Ron talks about the co-opting of a zebra fish researcher who has been able to add a gene to zebra fish that keeps the itaconate shunt on. He says that fish with the itaconate shunt on swim less. They are testing drugs to see what improves the situation. I think the first step would be to confirm the hypothesis that this is actually the problem in ME/CFS. I guess Rob Phair is working on this, so perhaps they are doing that too.
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I agree that proving the mechanism [edit: in humans would make most sense to do] before trying to use the fish for drug discovery. It's no surprise that fish that have strong artificial induction of this gene throughout the body exhibit abnormal behavior when that gene is normally only active in a subset of immune cells under specific conditions.
 
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V.R.T. said:
If they did this we would be in business! I wonder how complicated/possible it would be to prove or disprove.

@MelbME are there any patient studies in the works that could shed some light on whether the itaconate shunt is behind ME/CFS?
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Yes there are some attempts to test it but it's quite difficult to prove or disprove these hypotheses. That's the main limitation of working on this hypothesis IMO. Obviously you want to be able to test it in a way that gives a definitive answer, that's not possible yet.
 
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