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

V.R.T. said:
Do we have estimations of how long SequenceME and Long Covid will take? I think someone estimated 18 months when it was first announced but that was when it was just going to be the analysis of DecodeME samples iirc. Obviously the LC collection phase will take longer.

If the project is modular, perhaps the DecodeME WGS sample analysis and LC things will happen separately. So perhaps you might see 18-24 months for the DecodeME part, and 2-3 years for the long covid part. But would they overlap? And will the LC part be one module or will collection and analysis be two?
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The project's timeline is hugely dependent on if, when, and how much further funding is found. For example, there is a big difference between a scenario where the whole £20 million is secured in one go within the next 6 months and one where it takes a total of 5 years just to find funding for the individual work packages of the project.

The idea with it being modular is so that the entire amount doesn't need to be found to allow for progress to be made (although obviously multiple millions still do need to be found for each stage) but obviously this does make it more difficult to give a straightforward timeline.

However, with this 'kick starter' funding in place much work is being done and will include providing clearer communications to the timeline, and I don't want to provide my current best guess when something official should be available fairly soon.


V.R.T. said:
Another important question - does the team plan to publish the DecodeME WGS analysis when it is ready, or only publish once the long covid samples are collected and analysed too?

Personally I would prefer that they published the DecodeME portion as soon as it is done so that some results could be shared fairly promptly and drive forward research, and then they can later be strengthened by/contrasted with the LC cohort.
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Yes, the intention would be to publish the ME/CFS results without waiting on the results from the LC stage.
 
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Nightsong said:
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

Link | Archive link (The Times, 11 May 2026)
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Is this real? I haven't seen it anywhere else. Great news if it's real!

Edit: I mean they could have funded the whole thing and this isn't even enough for the DecodeME sample sequencing but it's a good start.

Why give them enough for 6000 samples but not for 9000? That's some really flawed investment/return type logic there imo. Nonetheless thrilled to see this is really going ahead.
 
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Nightsong said:
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

Link | Archive link (The Times, 11 May 2026)
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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?
 

Major funding secured for Sequence ME & Long Covid, a DecodeMe project​

11 May 2026



We are thrilled to announce that our landmark research study, Sequence ME & Long Covid, has received major funding (£4.75m) from the UK government, signalling a transformative step toward
uncovering the biological roots of ME/CFS and Long Covid.

www.actionforme.org.uk

Major funding secured for Sequence ME & Long Covid, a DecodeMe project

We are thrilled to announce that our landmark research study, Sequence ME & Long Covid, has received major funding (£4.75m) from the UK government, signalling a transformative...
www.actionforme.org.uk www.actionforme.org.uk

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Am a bit mindblown. Glad but mindblown.
Do we know if this funding ( described as from "the UK government") is coming direct from DHSC or via the MRC? Sorry if this is clear from the information and I've missed it.
If from the DHSC, is this a usual way for grants to be awarded?
 
Binkie4 said:
Do we know if this funding ( described as from "the UK government") is coming direct from DHSC or via the MRC? Sorry if this is clear from the information and I've missed it.
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The funding was from the Office of Life Sciences, which is part of both the Department of Health and Social Care and the Department for Science, Innovation and Technology. So the funding was not from the MRC but was via them, for internal governmental reasons I don't understand.
 
Braganca said:
I wonder will the Long Covid cohort be people with long Covid ME/CFS and properly defined as such?
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The definition is yet to be decided upon and forms part of the work already funded by previous supporters. I can't guarantee at this stage what the definition will be but we are well aware that it will need to be better than anything as vague as "3 months of any symptom at all after a Covid infection". Given that eventually we will be comparing them with DecodeME particpants I personally would like to see all LC participants evaluated with the DecodeME questionnaire for likely ME/CFS status.
 
V.R.T. said:
Is this real? I haven't seen it anywhere else. Great news if it's real!

Edit: I mean they could have funded the whole thing and this isn't even enough for the DecodeME sample sequencing but it's a good start.

Why give them enough for 6000 samples but not for 9000? That's some really flawed investment/return type logic there imo. Nonetheless thrilled to see this is really going ahead.
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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.


www.thetimes.com

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 www.thetimes.com


.
 
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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"


www.thetimes.com

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 www.thetimes.com

.
 
Lou B Lou said:
Does anyone have a good quote from Chris Ponting about the value of the Sequence ME research?

The latest ME-denial trope consists of announcing that genetic research on ME is worthless as 'it wont lead to treatment'.

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“By deeply sequencing the complete genomes of 6,000 DecodeME participants using advanced DNA sequencing 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.”

Prof Chris Ponting, DecodeME Investigator, University of Edinburgh

From https://www.actionforme.org.uk/major-funding-secured-for-sequence-me-long-covid-a-decodeme-project/

While negative comments underneath a news article can be understandably upsetting and frustrating, my advice would be to ignore them. Typically, anybody with any actual power to influence things isn't posting in a comments section of a newspaper.
 
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Sasha said:
I agree. I expect very few people read comments on an article or even realise that they're there.
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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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Lou B Lou said:
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 doubt that too, but whether they're right or not about people reading is another matter!
 
Andy said:
The definition is yet to be decided upon and forms part of the work already funded by previous supporters. I can't guarantee at this stage what the definition will be but we are well aware that it will need to be better than anything as vague as "3 months of any symptom at all after a Covid infection". Given that eventually we will be comparing them with DecodeME particpants I personally would like to see all LC participants evaluated with the DecodeME questionnaire for likely ME/CFS status.
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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
 
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