DecodeME in the media

[Hutan]

This thread is for media and social media items about DecodeME following the release of the results, and for discussion about the media items.

For the analysis of the DecodeME results, there will be a research thread for the paper which we will link here.

Edit:
The preprint thread here:
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, Boutin et al

Simon McGrath has written and article for the DecodeME website explaining the research.
Thread here:
DecodeME blog: X marks the spot where ME/CFS biology can be discovered


Some links to coverage:

Press release - University of Edinburgh



6 August 2025

Chris Ponting on the BBC - limited to UK viewers

Watch BBC Scotland live - BBC iPlayer

Watch BBC Scotland live on BBC iPlayer.

www.bbc.co.uk

Key genetic differences found in people with chronic fatigue syndrome

People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition

www.newscientist.com

ME is a real illness, genetic study shows

Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome

www.telegraph.co.uk

Without paywall: https://archive.ph/BSpnr

Financial Times: https://www.ft.com/content/b82711ca-0842-4e73-9475-52435997e349

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness

www.theguardian.com

https://www.sciencemediacentre.org/...deme-genome-wide-association-study-of-me-cfs/

The key genetic difference ME sufferers have from others – and what it means

Scientists said the findings offer the first robust evidence that genes contribute to a person’s chance of developing the disease

www.independent.co.uk

Breakthrough genetic study offers treatment hope for ME patients

Experts say ‘groundbreaking’ findings will be transformative as well as helping to end myth that the condition is ‘all in the mind’

www.thetimes.com

(Alt links for the Times piece: Archive.ph, PrintFriendly)

 

[Tree]

Is there a way we could help the media effort of Decode Me?

If the results are very promising, could we help by tweeting results with #decodeme for instance?

 

[Dakota15]

@Andy im pretty close with several reporters in the U.S. who have covered ME & LC over the years. If these connections can help with any media coverage of this (if results dictate) just let me know and I can reach out to any to gauge interest

 

[Andy]

@Andy im pretty close with several reporters in the U.S. who have covered ME & LC over the years. If these connections can help with any media coverage of this (if results dictate) just let me know and I can reach out to any to gauge interest

Should they want to reach out to the University of Edinburgh then our contact in the UoE PR team is Jess Conway, jess.conway@ed.ac.uk, and she can coordinate such things as interview requests.

 

[Dolphin]

 

[Fizzlou]

Thanks in advance to @Adam pwme!!
One clip already out. Take care Adam

 

[Fainbrog]

Apparently Chris Ponting is on BBC Scotland at 1900 to discuss the Decode results.

 

[Fainbrog]

Watch BBC Scotland live - BBC iPlayer

Watch BBC Scotland live on BBC iPlayer.

www.bbc.co.uk

 

[Ariel]

Apparently Chris Ponting is on BBC Scotland at 1900 to discuss the Decode results.

Sorry to sound incompetent but how do we find that? Does anyone have a link? (Am in UK)

ETA: Gah! Thanks @Fainbrog

 

[MrMagoo]

He’s on in a minute if you want to search it live on BBC now

 

[Nightsong]

New Scientist:

Key genetic differences found in people with chronic fatigue syndrome

People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition

www.newscientist.com

The Telegraph:

ME is a real illness, genetic study shows

Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome

www.telegraph.co.uk

 

[Hoopoe]

Watch BBC Scotland live - BBC iPlayer

Watch BBC Scotland live on BBC iPlayer.

www.bbc.co.uk

It's not available for people accessing it from outside a specific geographical region.

 

[Yann04]

8 hits apparently

Post in thread 'DecodeME in the media'

Today at 7:04 PM

New Scientist:

Key genetic differences found in people with chronic fatigue syndrome

People with chronic fatigue syndrome, also known as myalgic encephalomyelitis, appear to have eight genetic signals that differ from those without the condition

www.newscientist.com

The Telegraph:

ME is a real illness, genetic study shows

Breakthrough provides ‘credibility and validity’ for sufferers of the disease known as chronic fatigue syndrome

www.telegraph.co.uk

• Nightsong

• 

 

[ME/CFS Science Blog]

No email yet but seeing some articles being published:
Key genetic differences found in people with chronic fatigue syndrome | New Scientist

 

[Sasha]

Just caught something I think about a big study on ME and DNA on the summary of the C4 news but it whizzed past me - anybody catch it? Is it DecodeME?

 

[MrMagoo]

Chris said “brief notes of bbc Scotland news at 7.05pm”
8 places in genomes that predispose ppl to getting a diagnosis of ME

 

[Peter T]

Decode ME is a headline item in Channel 4 main 7pm evening news. It looks like it will be the second item.

 

[Fainbrog]

X marks the spot where ME/CFS biology can be discovered - DecodeME

06 August 2025 Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world’s biggest ME/CFS study – and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate...

www.decodeme.org.uk

 

[Tia]

Oh I've been listening to radio Scotland, didn't realise you meant TV! I don't have a tv, hope someone can update when watched

 

[Gecko]

Just caught something I think about a big study on ME and DNA on the summary of the C4 news but it whizzed past me - anybody catch it? Is it DecodeME?

It is DecodeME yes, with Prof Chris Ponting being interviewed.