SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

[Utsikt]

That is great news they have funded SequenceME. 6000 people for a complete sequencing. Was it always 6000 or did they intend to do the full ~15k but couldn't get it funded?

I think they’ve divided the project into chunks so it’s easier to get funding. Now the government can say they’ve funded this particular thing, instead of only contributing 25 % of a larger project.

 

[OrganicChilli]

Hi Andy, thanks.
Am looking at the phases on website. Do they run concurrently or does team have to go through mobilization phase first? Feels disappointing to not jump into sequencing since the samples exist..

Phase 1 - Project Mobilisation (2 years)

• Building partnerships and securing funding for the next stages of the study
• Define Long Covid case criteria and gather expressions of interest for participation in the Long Covid arm of the study

Phase 2 - ME/CFS sample sequencing (1 year)
• Sequencing 6,000 ME/CFS samples, previously collected through DecodeME

Additionally, funding for Phase 2 has recently been announced. This includes £4.75m of support from the Office for Life Sciences (OLS) and the Medical Research Council (MRC), as well as a generous donation of £174,414 from the WE&ME Foundation. Phase 2 will focus on sequencing 6,000 ME/CFS samples previously collected through DecodeME, using Oxford Nanopore’s long-read sequencing technology. This phase will run alongside Phase 1.

Sequence ME & Long Covid

SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.

www.actionforme.org.uk

 

[Braganca]

This phase will run alongside Phase 1.

Excellent.. thank you.. didn’t see!

 

[Andy]

Hi Andy, thanks.
Am looking at the phases on website. Do they run concurrently or does team have to go through mobilization phase first? Feels disappointing to not jump into sequencing since the samples exist..

Phase 1 - Project Mobilisation (2 years)

• Building partnerships and securing funding for the next stages of the study
• Define Long Covid case criteria and gather expressions of interest for participation in the Long Covid arm of the study

Phase 2 - ME/CFS sample sequencing (1 year)
• Sequencing 6,000 ME/CFS samples, previously collected through DecodeME

All phases are dependent on funding being available but once it is then any phase which isn't dependent on a previous one can get going.

Work on phase 2 sequencing has already started as funds were awarded a number of weeks ago but we have had to wait for the government announcement to be able to talk about it publicly (ironically the offical announcement doesn't seem to have surfaced yet).

 

[Jonathan Edwards]

Congratulations to Chris, Sonya, Andy and everyone. I had some idea this was coming but it was kept quite well hidden!

The route is intriguing. Hopefully it suggests that there are forces at work within government organisations that have finally put the wet blankets at MRC in their place. We need more - lots more - but I don't see turning back as an option now.

The comment from Riley indicates just how petty and malicious false friends can be. SequenceME and other projects that will grow up around it will tell us what ME/CFS really is within a few years now, I am pretty sure. The power of cross-referencing genetic data looks to me to be huge and I think we have just scratched the surface. Treatments may not follow immediately but targeted drug discovery is now very impressive. Moreover, even without treatments, people with ME/CFS will be able to receive the respect and support for their disability they deserve.

 

[BrokenBeaktheBrave]

BPS supporters, many of them Drs, come out in numbers to comment on any ME article in the Times, the same names year after year. They systematically reinforce all the debunked psycho-behavioural dogma. I doubt they would bother if they thought no one was reading.

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I agree. And people do read those comments - our friends, our family, our GPs. While those comments won't affect the funding, they do sustain the stigma and our ability to be believed in our day to day lives.

 

[Andy]

Official Dept of Health and Social Care announcement, "Thousands of ME/CFS patients to benefit from first genomics study". As the announcement on AfME's website says though, "Note: we were not given the opportunity to input into the DHSC's press release regarding the funding announcement.".


Thousands of ME/CFS patients to benefit from first genomics study

Chronic fatigue syndrome patients, also known as ME, to benefit from world-first genomics study.

• The government is investing £4.75 million in the world’s largest study of its kind to offer new hope to around 390,000 people living with the condition in the UK
• For the first time, scientists will be able to build a high-resolution genetic map of ME/CFS, paving the way for better diagnostics and future treatments
• The funding builds on the government’s earlier investment in the DecodeME study, which created the world’s largest ME/CFS research cohort

Chronic fatigue syndrome (CFS) patients in the UK are set to benefit from a world-first genomics study into the condition, also known as ME - which affects hundreds of thousands of people nationwide – the government has announced today.


Backed by £4.7 million of government funding, the study will enable the SequenceME programme to sequence the genomes of up to 6,000 ME/CFS patients, generating a world-first high-resolution genetic map of the illness.


This first-of-its-kind programme cements the UK’s position at the forefront of global genomic research, building on a track record of scientific firsts stretching from the Human Genome Project to the COVID-19 genomic surveillance effort.


This breakthrough could unlock the biological causes of the condition for the first time ever, paving the way for better diagnostics and new treatments for those who live with the disease.


ME/CFS causes debilitating fatigue, sleep difficulties and cognitive impairment. Around a quarter of those diagnosed are severely affected, leaving them housebound or unable to work. Despite the scale of its impact, there is limited understanding of the causes and biological mechanisms driving the condition.


Dr Zubir Ahmed, Health Innovation and Safety Minister, said:

For too long, people with Chronic Fatigue Syndrome have faced a condition that is poorly understood, difficult to diagnose and without effective treatments.


This government is determined to change that, and today’s investment is an historic breakthrough in doing so. British scientists are leading the world in genomic research, and this investment puts them at the cutting edge of a challenge that affects hundreds of thousands of people in this country.


Through this world-first genomics study, we are giving scientists the tools they need to understand the biological causes of this illness - laying the groundwork for better diagnostics and new treatments that hundreds of thousands of patients deserve.

The SequenceME programme brings together the University of Edinburgh, Action for ME, the European Bioinformatics Institute (EBI) and Oxford Nanopore Technologies, combining world-leading expertise in genomics, patient advocacy and bioinformatics, to deliver a dataset unlike anything previously available anywhere in the world.


The investment builds directly on previous funding by the government for the DecodeME study, which established the world’s largest and most deeply characterised ME/CFS research cohort and laid the scientific foundations for large-scale genomic analysis.


DecodeME was funded by the Department of Health and Social Care through the National Institute for Health and Care Research, jointly with the Medical Research Council.


This announcement forms part of the government’s wider commitment to improving care and research for people with ME/CFS, building on the ME/CFS Final Delivery Plan published in July 2025.


The NIHR is also funding two projects to explore the feasibility of a clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including ME/CFS.


In addition, the NIHR’s £1.4million HERITAGE study aims to help improve the quality of care for these conditions by developing a national service framework (NSF) for long COVID and ME/CFS. This includes training and resources for specialist services and primary care across the UK.


Aisling Baker-Ford, 32 years old, lives in Ayrshire (Scotland) and was diagnosed with Myaglic Encephalomyelitis (ME) in 2022, said:

I was diagnosed with Myaglic Encephalomyelitis (ME) in 2022 after a 2 and a half year battle with a range of specialists even a neurologist telling me ’it is all in my head’. This unfortunately is a very common occurrence for people like me with this condition.


I hope this funding allows further understanding and to identify significant genetic links of this condition. I hope more awareness of ME and how it can effect someone’s life from all levels of the condition and not just the worst, most severe cases. For many people with ME your symptoms can go from severe to moderate to even mild if you are “lucky”. At the moment I am going through the best period I have had since my diagnosis BUT people like myself live in constant fear of a relapse, a day where you wake up and cannot physically get yourself out of bed because you know those severe symptoms will always come back around.

Caroline, Aged 56, Lives in South West England, who has a diagnosis of ME said:

I am absolutely delighted with the announcement of funding for Sequence ME. Those of us afflicted with this life changing illness have waited a very long time to have our condition taken seriously enough to warrant funding for reseach. That this is now happening is both wonderful and such a relief!


Hopefully for generations going forward - our children, grandchildren and great grandchildren, a diagnosis of ME wont mean a lifetime of suffering in silence and disbelief. There could be new ways to treat symptoms, or better still, a cure. Thank you from the bottom of my heart on behalf of all the ME community, for listening and helping those of us who live with ME take part in research and have some hope for the future.

STAKEHOLDER COMMENTS​

Sonya Chowdhury, Chief Executive, Action for ME, said:

We are delighted to receive this investment in Sequence ME & Long Covid to enable us to start sequencing DNA samples. This project builds on DecodeME and creates even greater value from the samples provided by people with ME/CFS.


However, there is more to do, and this must be only a start to the significant investment in ME/CFS research that is so desperately needed to bring funding to the levels seen in other illness areas. ME/CFS research has been neglected for decades; research in ME/CFS and overlapping illnesses like Long Covid must become a priority. We are very grateful not only to DHSC but also to our charity partners and donors who have helped make this possible.

Dr Charles Shepherd, Hon Medical Adviser, The ME Association, said:

The ME Association is delighted by the government decision to invest £4.75 million in new research funding to allow vital research into the role of genetics in ME/CFS to continue.


Building on the findings from DecodeME, SequenceME should provide a better understanding of the underlying disease process, in particular how the immune and nervous systems respond to a triggering infection in ME/CFS.


For people with ME/CFS there is now real hope that we have a route to finding a much-needed diagnostic biomarker blood test and effective forms of treatment.

Professor Chris Ponting, DecodeME investigator, University of Edinburgh, said:

By deeply sequencing the complete genomes of 6,000 DecodeME participants using advanced long-read technology, this project will allow us to pinpoint individual genes disrupted in ME/CFS, moving beyond broader chromosomal signals identified to date. Crucially, it offers the potential to uncover patterns of familial inheritance and to break down this complex disease into its underlying biological causes – bringing us closer to more precise diagnosis and, ultimately, targeted treatments.

 

[V.R.T.]

Work on phase 2 sequencing has already started

Thats excellent news! Does the total time of 1 year for phase 1 include the time it will take to write the analysis?

 

[Simon M]

The award is from the Office for Life Science, and I Think Part of Its Remit Is Promoting Innovation in Healthcare. I understand from Chris Ponting) that this will be the largest full genome sequencing a single disease so far. Suddenly, ME/CFS is moving from the back of the queue to being at the cutting edge (though this might be a one off))

Note the quote from the minister for health innovation

Dr Zubir Ahmed, Health Innovation and Safety Minister, said:

For too long, people with Chronic Fatigue Syndrome have faced a condition that is poorly understood, difficult to diagnose and without effective treatments.

This government is determined to change that, and today’s investment is an historic breakthrough in doing so. British scientists are leading the world in genomic research, and this investment puts them at the cutting edge of a challenge that affects hundreds of thousands of people in this country.

Through this world-first genomics study, we are giving scientists the tools they need to understand the biological causes of this illness - laying the groundwork for better diagnostics and new treatments that hundreds of thousands of patients deserve.

Blog coming shortly

 

[Trish]

Huge thanks to all involved.

 

[Andy]

Thats excellent news! Does the total time of 1 year for phase 1 include the time it will take to write the analysis?

Sadly, phase 2 doesn't include any analysis at all, it is solely a data generation phase. We would need further funding for the analysis of the data.

Side note for tech savvy people, the amount of data generated will need several petabytes of storage. Given I started with computers that had kilobytes of storage, I'm impressed by that amount.

 

[Jonathan Edwards]

Suddenly, ME/CFS is moving from the back of the queue to being at the cutting edge (though this might be a one off))

This can happen. When Tiny Maini just beat me to getting a TNF inhibitor into clinical use for RA in 1993, rheumatology went from being a backwater specialty with a drug budget of fourpence ha'penny to the biggest budget holder in the hospital. Things never looked back.

 

[V.R.T.]

Sadly, phase 2 doesn't include any analysis at all, it is solely a data generation phase. We would need further funding for the analysis of the data.

Wow that's deeply frustrating! Hopefully it can be secured in the next year - it would be so frustrating if all the data we needed were just sitting on some hard drives unable to be analysed.

It's absolutely mind boggling that the government wouldn't spring for the cost of the analysis!

 

[Kitty]

Congratulations to everyone, this is fantastic news. The government grant is important in itself, but hopefully it will also have a pump-priming effect.

Neil Riley still causing trouble, this time in the Comments to the Times article:

"I agree. The vast majority of people with ME get it after a viral illness with many having had glandular fever previously.
Genetic coding will do nothing to help find a form of treatment that benefits this terrible illness.

"Mrs Trellis of north Wales"

Did DecodeME completely pass him by or something?

 

[Kitty]

The award is from the Office for Life Science, and I Think Part of Its Remit Is Promoting Innovation in Healthcare. I understand from Chris Ponting) that this will be the largest full genome sequencing a single disease so far.

This is what's frustrated me about the lack of government money so far—it's such a fantastic opportunity to put UK science on the global stage. Never mind research funds, it should warrant money from the UK plc marketing budget.

On the upside, though, it's alway possible further funding can be obtained via other government schemes. The money might ultimately come from the same source, but it's often channelled into different strands, packages, priorities, etc.

 

[Ariel]

BPS supporters, many of them Drs, come out in numbers to comment on any ME article in the Times, the same names year after year. They systematically reinforce all the debunked psycho-behavioural dogma. I doubt they would bother if they thought no one was reading.

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I completely agree - they seem to comment as a form of counter-programming or narrative to offset the impact of the piece being published, so it does seem worth commenting with something sensible if energy allows. (I no longer subscribe).

Many people do read comments and are influenced by them immensely in various ways even if they do not recognize it, which is why companies and individuals run influence campaigns using internet comments by both humans and bots on various platforms.

 

[bobbler]

Oh god - the 'I cured my ME or LC by the power of my mind' idiots are out in the Times Comments to this article.

I do wish more science literate S4ME members would take advantage of the low cost deal for Times subscription (£1 a month for a few months) - that enables you to Comment on these articles and counter the sc*m 'cure' disinformation, and correct the frequent misinformation by uninformed Drs who still push 'psychological explanations' for ME in the Times Comments to every single article on ME.

Landmark ME study will map patients’ DNA in mission to find cure

The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome

www.thetimes.com

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It’s frustrating that they changed comments so that you can’t use an alias and must have your real name. I think that massively disadvantages patients and maybe experts (in science or medicine of the area/employed in jobs relevant but where employer reaction of other things have to be considered ) for different reasons but they are vulnerable , and the ones that have knowledge and who it directly effects (I can’t belief bps tried to invert ‘wearing the consequences’ into trying to con those who parrot any old line that meant the same rather than the opposite to ‘conflict of interest’ where you know you get to make a fortune whilst someone else wears the consequences)

Compared to Joe blogs who probably thinks even if they were unlucky enough to find out their line manager both read their comment and had a relative with he/cfs then who that they would report it to or would have to back them up in action doesn’t also ‘secretly agree with them’ or at least doesn’t fancy the argument . Or bps names we know - and we all know what their attitude/M.O. is to that.

Anyway my point is that where it is something like this in particular that policy change massively disadvantages one side in comparison to the other.

Tbfair They lost out on some of the good comments going from most of their threads due to this (as a lawyer who might have commented with general insight now might know when it’s under their own name it is perceived as giving a statement type thing, similarly if it was on banking those who might work in banks used to be able to give live insight from their general position, unis have people who worked there give insight and their thoughts without it being ‘representative of the institutions line’ etc) too

funny how this policy change happened not long after the new guideline round table many months of debacle. I get the impression the bps didn’t like getting hit with replies full of facts by people when they wrote in that comment section during that … so I still can’t help but wonder…

 

[bobbler]

Neil Riley still causing trouble, this time in the Comments to the Times article:

"I agree. The vast majority of people with ME get it after a viral illness with many having had glandular fever previously.
Genetic coding will do nothing to help find a form of treatment that benefits this terrible illness. The only benefit of this new study is that Government has finally recognised that research is needed...but not this one.

Neil Riley-former Chairman of The ME Association"

Landmark ME study will map patients’ DNA in mission to find cure

The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome

www.thetimes.com

.

Well that’s showing true colours and in a way a relief to see him confirm it unequivocally that he’s thought that way all those years whilst he pretended ‘I only meant it gently’ type weadling (you could almost see the wink) on the ‘animals must move’ debacle(s) where he even was lazy on that and just literally rolled out the same copy he’d written years before to do it again

Anyway in a sane fair world this should be seen as both possible and maybe slightly cheeky but fair to point to this on the MEA Facebook and ask a question about whether he was saying exactly this whilst he was in his role for those years. But I doubt these days it would be productive without some genius thought how to - a few years ago that did used to at least be uncensored and while sometimes grumpy it would have been heard and read and replied to but it feels like that’s changed (I’d be intrigued by the real reasons there - tho there are some fair ones too)

 

[Sean]

Seems to be a disturbance in the force within the MEA.



Riley's nonsense reminds of Edward Shorter's nonsense that there will never be any evidence that ME/CFS is biological.

 

[Kitty]

It’s frustrating that they changed comments so that you can’t use an alias and must have your real name.

Must have your real name, or must have an email address in your made-up one?

I don't know because I've never read The Times in my life, but the latter applies in most cases. I know people with two or three Gmail addresses for the purpose.