Simon McGrath

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

A blog explaining DecodeME's remarkable findings. (Reproduced from the original blog I wrote for DecodeME's website). In case you need another look.

mecfsresearchreview.me/2025/08/11/d...

YouTube video by David M Tuller Interview with Professor Chris Ponting about the DecodeME results.

I spoke with Profiessor Chris Ponting @cgatist.bsky.social about the DecodeME findings, which reported eight "genetic signals" in people with ME/CFS related to the nervous and immune systems: www.youtube.com/watch?v=CGUm...

Sir, As someone who has been severely disabled by ME for more than 30 years, I was delighted to read about the results of DecodeME. However, Chris Ponting is right to express anger that this type of genetic analysis was not done 15 years ago. As you reported (News, Jul 22), after a three-year delay, the Department of Health and Social Care has published its dismal delivery plan for ME, but it included no commitment to funding and no pathway to providing adequate services. For decades, governments have told us they are committed to helping people with ME, but all the evidence suggests the opposite. DecodeME has given me and millions of others hope. The time has long since passed for the government, funding bodies, medical institutions and individuals to acknowledge their mistakes, apologise to patients, and act to ensure that quality scientific research is sharply increased and patients are given access to appropriate physician-led services. Robert Saunders Balcombe, W Sussex

My letter in The Times about #DecodeME and the need for the government, institutions and individuals to acknowledge their mistakes, apologise, and act to ensure that research is sharply increased and patients are given access to appropriate services: www.thetimes.com/comment/lett...

Our latest News in Brief post has headlines & links to further reading for #MECFS & #LongCovid news, advocacy, and research for the week of Aug 4 - 10.

Don't miss the news about the #DecodeME initial DNA results!

There's also news about #SevereME Day, Aug 8.

www.s4me.info/threads/news...

So that's eight genetic signals using the accepted standard of p< 5x10^-8.

Replication was always going to be challenging, given the limited quality of available cohorts. I'm sure it will continue on this.

Of course. The plan was always for participants and other PwME to see results as soon as poss. The results are now out (inc extensive summary data), so other researchers can use the data if they are convinced by preprint.

There will be more analysis before submission for publication

Large sculpture in an outdoor setting of a round teapot created with lace-like metal patterns

Pavillin de Thé, 2012 by Lisbon based artist Joana Vasconcelos #womensart

Raven Steals the Sun a glass collaboration sculpture by Tlingit artist Preston Singletary and David Franklin.

- Comparing ME with other illnesses. To date, they have found no significant overlaps, other than with chronic pain. This illness appears to be very unusual.
- They will do more detailed analysis to home in more tightly on the most likely to be causal

2/ends
@cgatist.bsky.social

YouTube video by David M Tuller Interview with Professor Chris Ponting about the DecodeME results.

#DecodeME A brilliant interview with Chris Ponting by @davetuller1.bsky.social

Chris gave new details, including:
- They got feedback on a draft of the pre-print from independent researchers, to help them test their findings and improve the manuscript.
1/

youtu.be/CGUmcB_YIaA?...

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
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Channel 4 News - DecodeME Results - Video Summary - ME is linked to your genetics. They’ve found eight areas of genetic code in people with ME are ‘significantly different’ to the DNA of people without the disease.

"Manhattan plot" for DecodeME's principal genome-wide association study (GWAS) showing 6 genome-wide significant associations, and 2 additional signals that are significant in DecodeME's other GWAS.

Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome now on medRXiv
www.medrxiv.org/content/10.1...

@janetdafoe.bsky.social @johnthejack.bsky.social

This powerful poem, Art Therapy, might resonate on #SevereMEDAy. It's by my friend and published poet Veronica Ashenhurst, who grows ever more severe. #Gaslighting

Read the whole poem at acropolisjournaluk.wixsite.com/acropolisjou...

@tomkindlon.bsky.social @strangerandstranger.net

If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/

Alternatively donate directly to Prof Ponting's #MECFS research
donate.ed.ac.uk/support/ME-C...

#CFS

A woman affected by the consequences of myalgic encephalomyelitis - ignoring ME/CFS leads to severe disability

August 8th- a moment to spotlight a disease that devastates lives and drains economies

𝗠𝘆𝗮𝗹𝗴𝗶𝗰 𝗘𝗻𝗰𝗲𝗽𝗵𝗮𝗹𝗼𝗺𝘆𝗲𝗹𝗶𝘁𝗶𝘀 (ME, also known as #MECFS) affects 2 million+ in Europe

EMEA has practical, achievable proposals the EU can adopt now:
#SevereMEDay
Read on
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Facts about the effects of myalgic encephalomyelitis on citizens and on economies

💜 Over 2 million Europeans live with ME
🛌 25% are house-or bedbound, often for decades
📉 Billions are lost in disability claims, productivity, and delayed care

This is more than a health crisis — it is also an economic crisis hiding in plain sight
#MECFS #SevereMEDay
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IMAGE DESCRIPTION: A black background with photo of two lit candles and a white lily. Heading: Severe ME Day 20925. Wording - Please take a moment to honour the memory of those we have lost as a result of this devastating disease

It's #SevereMEDay - 8th August 2025 **Trigger Warning: Suicide**

On this day, please let us take a moment to honour the memory of those we have lost, including those who tragically took their own lives as a result of this devastating illness.

#SevereME

Exactly. They are the X on the treasure map pointing where to look. They show that something is going on and where it's happening, but not what is happening. Hence the emphasis on genetic signals.

More likely, another, unkown variant in LD with the gene and known variant is the culprit. That;s because most variants are unknown in GWAS which target so few variants. The unknown variant may well be part of the gene (or it's regulatory region).
Any clearer?

Haha! Let me try again. So if the known variant is an A or a G, and lets say that activity for a gene is higher when the variant is an A than a G. This doesn't mean the known variant is causing the change in gene expression....

Thanks - I guess that is pretty standard, because DSQ-2 is so common. But nothing there on duration or that distinguishes PEM from the more common exertion intolerance.

Thanks, Sarah – I am surviving so far.

By chance, I had family around this evening for a quick visit with takeaway. We watched together the channel for news report, spellbound. It was a wonderful moment to share.

An excellent thread summarising and explaining the main results from DecodeME. With the promise of a blog to come.

SequenceME: first of a kind genetic study - Action for ME A groundbreaking partnership has launched today. The partners are working together to secure funding for a study which will analyse the entire...

22) The researchers hope to look at rare genetic variants in a follow-up study called SequenceME. This will get an even more detailed picture of the DNA differences associated with ME/CFS.

Rare variants might have bigger effect sizes.
www.actionforme.org.uk/sequenceme-f...

Were they diagnosed by an expert study team? All the. DecodeME participants reported clinical diagnosis.

And do we know exactly which questions were used to define PEM for the Dutch lifelines study? Thought you might know.

UKB patient cohort was also much smaller, and had a questionable PEM definition.

Hopefully, it will attract existing experts in these genes/functions. That's what would we really move things on.

Unfortunately, the analysis did not find nearby HLA genes that are in linkage disequilibrium with this one were significant So they plan to do a more sophisticated analysis of HLA to firm up on these findings.

Sorry, not trying to be picky, just clarifying