Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

[josepdelafuente]

I had a message from my UCL genetics colleagues today to say that they were going ahead with an ME/CFS targeted projected on one of the DecodeME genes.

Sounds like great news!

 

[ME/CFS Science Blog]

an ME/CFS targeted projected on one of the DecodeME genes.

Can you tell which one?

 

[Jonathan Edwards]

Can you tell which one?

They are interested in CA10 in the first instance because they come from a pain background.

 

[neophyte32]

They are interested in CA10 in the first instance because they come from a pain background.

Excuse me, I'm a novice. Chagpt tells me it's a gene expressed in the brain: neuronal signaling, synaptic plasticity, cerebral connectivity, and the autonomic nervous system. Why do you think he's focusing on this particular gene? What might he discover? Does this fit with your theory? Thanks

 

[Yann04]

Why do you think he's focusing on this particular gene?

I think it’s the only gene we’re decently confident was a decode ME hit. (The other ones we have a hit that could be one of multiple genes).

 

[forestglip]

Also, the same gene/locus was already found in chronic pain, so it makes sense for pain researchers to look at.

we did find significant evidence for a shared genetic signal explaining ME/CFS and multisite chronic pain phenotypes at chr17q22 (CA10)

The replication in a past study of a somewhat similar condition also makes it less likely that this is a false positive finding.

 

[Jonathan Edwards]

Right.
Also the high resolution pattern of gene linkages looks as if there may be a specific piece of DNA to focus in on that may control neural signals, including pain. It may not be brain. It may be further down the nervous system. I cannot really give more detail but the DecodeME finding seemed to make sense to my colleagues.

 

[ElephantNerd]

@Jonathan Edwards Thank you for sharing what you are allowed to share! Totally understand that you can't share certain aspects. I really needed some hope today that progress is being made, so I appreciate you taking the time and effort to share what news you can with us.

 

[Daisymay]

Very interesting to hear, thank you. Could this gene relate to small fibre neuropathy does anyone know?

 

[Jonathan Edwards]

Very interesting to hear, thank you. Could this gene relate to small fibre neuropathy does anyone know?

Maybe more to do with fibres that bring noxious signals from muscles but I forget the detail. There is a huge amount of detail known about these genes' products in nerve cells now. It is a question of joining all the dots I think.

 

[Amw66]

I had a message from my UCL genetics colleagues today to say that they were going ahead with an ME/CFS targeted projected on one of the DecodeME genes. I am very pleased they are taking so much interest. Who knows what they will find but they are taking this seriously and the obviously know what they are doing.

You've made my day

 

[Braganca]

I had a message from my UCL genetics colleagues today to say that they were going ahead with an ME/CFS targeted projected on one of the DecodeME genes. I am very pleased they are taking so much interest. Who knows what they will find but they are taking this seriously and the obviously know what they are doing.

This is exciting..
Will they use the DecodeME dataset, or gather new patient samples or how does it work?

 

[Jonathan Edwards]

Will they use the DecodeME dataset, or gather new patient samples or how does it work?

I cannot give details but this is looking at the basic gene biology to try to figure out what the link to pain and ME/CF might mean.

 

[AliceLily]

This is really getting interesting and I have been thinking more on this this morning.

I do think this is a strong lead and has quite a heavy bearing on what I think caused my vulnerability to getting ME. I had a significant reaction to a medication at 20 years of age that left me with life-long localized pain and changed homeostasis. Ten years later I got ME via a nasty cold. This early reaction would tie into my ME and finally make sense of how I got ME. I guess we will see. I'm very pleased we are going in this direction and I think something will come of this. Early days though I know.

If anyone wants to learn more about what happened to me when I was 20 I wrote about it in my introduction years ago. I should forewarn that there is a lot of 'TMI' in my introduction, but I felt I had to put it all out there in case it was helpful in finding answers or any clues.