DecodeME in the media

The Guardian podcast:

www.theguardian.com

Can science crack the mystery of ME? – podcast

Madeleine Finlay speaks to science editor Ian Sample about a new study of how genes affect people’s chances of developing ME/CFS, and to Nicky Proctor who has ME and took part in the research. She also hears from Beth Pollack, a research scientist at the Massachusetts Institute of Technology...
www.theguardian.com www.theguardian.com

Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community. To find out more, Madeleine Finlay speaks to science editor Ian Sample and to Nicky Proctor, who has ME and took part in the research. She also hears from Beth Pollack, a research scientist at the Massachusetts Institute of Technology who studies ME/CFS and related conditions, about how scientific understanding of the illness has improved and how scientists are transforming this knowledge into ideas about future treatments
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Email newsletter:

After sharing our initial DNA results two weeks ago, we have been delighted by the community response, as well as the widespread media coverage.

As we approach the end of August, DecodeME's study team will change, and some staff will be leaving, but the project - and the data - will live on.

The new DecodeME website will now be the central place for our updates and to find our contact information. To ensure everything remains accessible long term, we’ve moved it across to the University of Edinburgh. The site contains all the same content, including results and contact details, and will continue to be updated as new findings are shared.

Visit the new DecodeME website at https://institute-genetics-cancer.ed.ac.uk/decodeme

Thank you to the 2,500+ people who joined our genetic results webinar last week! We hugely appreciate your engagement. For those who couldn’t attend live, you can find the recording and transcript on our new website.

Watch the initial results webinar at https://institute-genetics-cancer.e...study/initial-dna-results-august-2025-webinar

As we move into this next phase of DecodeME, our data access will continue to be open for applications, and we encourage researchers to analyse and explore our rich dataset. We are also looking to build on DecodeME through new research projects, which you can support here: Donate via Action for ME.

Thank you for all your kind messages in response to our initial DNA results. Whilst we are unable to respond to them all, we are grateful for your continued support.

Warmest wishes,
The DecodeME Team
 
Andy said:
We are also looking to build on DecodeME through new research projects, which you can support here: Donate via Action for ME.
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:thumbup:
There doesn’t seem to be a link to the donation page from the new website? At least none I could see. Is that because the university doesn’t accept outside donation links (to AfME in this case)? Otherwise it would be good to have one prominently somewhere

Earlier there was talk about two options for donations, one via AfME and the other directly to the university. Is the latter no longer active now that this phase of the project has officially finished?
 
Simon M said:
Perhaps the most important thing is that they did not show any genetic link to anxiety, depression or any other psychological condition – Which would be expected if the psychosocial theory was right.
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I'm not sure how extensive the genetic comparisons were - presumably the comparisons weren't made for every other psychological condition? That would be a big job, not only checking against other GWAS but also against findings of individual genes of interest for every psychological condition. I guess it's possible we might still see shared genetic signals from the parts of the DecodeME DNA that haven't been finalised yet or from diseases that haven't been compared yet, new GWAS that come out, so perhaps that isn't the argument to make strongly.

Yes, if the psychosocial theory was right we might expect shared genetic links with anxiety and/or depression, Of course shared genetic links wouldn't be proof that the psychosocial theory is right though. The psychosocial proponents might be as wrong about parts of anxiety and depression as they are about us. Significant subsets of 'anxiety disorder' and 'depression' might in fact have an immunological basis.
 
Ravn said:
There doesn’t seem to be a link to the donation page from the new website? At least none I could see. Is that because the university doesn’t accept outside donation links (to AfME in this case)? Otherwise it would be good to have one prominently somewhere
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As the University of Edinburgh will not allow donation links to third parties it was decided that no donation links be listed on the website.

Ravn said:
Earlier there was talk about two options for donations, one via AfME and the other directly to the university. Is the latter no longer active now that this phase of the project has officially finished?
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Nope, both are still active. Donate to Action for ME here, and to Chris' team at the University of Edinburgh here.
 
Hutan said:
Significant subsets of 'anxiety disorder' and 'depression' might in fact have an immunological basis.
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I've had low-grade anxiety for as long as I can remember but guess what happened to my anxiety (and "random" lightheadness and fainting spells) when I realised I had POTS and started treating it? Haven't experienced anxiety (or lightheadedness or fainting) for over 5 years now since supplementing with electrolytes.
 
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Hutan said:
I'm not sure how extensive the genetic comparisons were - presumably the comparisons weren't made for every other psychological condition?
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It looks from the paper as if the used a tool called coloc described in this paper: Bayesian test for colocalisation between pairs of genetic association studies using summary statistics. Which I think does just compare individual gwas studies via their summary statistics.

But one interesting thing I’m learning about some of these techniques and gene set comparisons is how much data is collected and that you can compare against a whole load of conditions. That said I’m also not totally sure about the best methods or statistical implications of all this.

So there is a set from the Molecular Signatures Database

GSEA | MSigDB

www.gsea-msigdb.org www.gsea-msigdb.org
For depression

HP_DEPRESSION

www.gsea-msigdb.org www.gsea-msigdb.org
Which is part of the collection “C5: Ontology” described here
And you can do gene set analysis to compare if there is any significance of that set of genes in the DecodeME data. And there wasn’t. Or for other sets for other psychological conditions. It’s not conclusive and maybe isn’t as strong as the coloc method but it would seem to add weight to the argument that there is no evidence showing a correlation.
 
Hutan said:
The psychosocial proponents might be as wrong about parts of anxiety and depression as they are about us.
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This is by far the main issue. How it doesn't disprove anything because none of those concepts and none of the evidence that supports them are any reliable themselves. It's comparing apples to tree bark sculptures.

But at the very least it can be used to repeat the simple basic fact that there is no such evidence as they claim, only their opinions. Oh, to live in a world in which simple basic facts matter. Must be nice.
 
BrokenBeaktheBrave said:
I've had low-grade anxiety for as long as I can remember but guess what happened to my anxiety (and random lightheadness and fainting spells) when I realised I had POTS and started treating it? Haven't experienced anxiety for over 5 years now since supplementing with electrolytes.
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Normal given that 'anxiety' is defined purely as having a vague set of symptoms, which it turns out are rather common symptoms of some illnesses. Not fundamentally different from ascribing pain to repressed trauma, then on solving the pain problem noticing that the psychosocial problem must have coincidentally have fixed itself magically, as the alternative explanation that it was always a BS excuse is politically uncout.

The psychosocial models are a completely hollow straw man. They dominate purely out of political and ideological preferences.
 
hotblack said:
And you can do gene set analysis to compare if there is any significance of that set of genes in the DecodeME data. And there wasn’t. Or for other sets for other psychological conditions. It’s not conclusive and maybe isn’t as strong as the coloc method but it would seem to add weight to the argument that there is no evidence showing a correlation.
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The trouble with arguing against them is they know perfectly well that a lot of mild depressive illness is like 'flu. Anyone can get it regardless of their genetic make-up, because it comes under the heading "Undesirable side effects of not being dead yet".

Even if the DecodeME analysis could show conclusively that there's no link, they'd still have an argument.
 
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