#SequenceME
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alemmatthees.bsky.social
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
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
September 23, 2026 at 8:46 AM
cgatist.bsky.social
Meanwhile, we keep going sequencing the entire genomes of 6,000 #pwME in the #SequenceME and Long Covid project.
www.actionforme.org.uk/research-cam...
institute-genetics-cancer.ed.ac.uk/research/sup...
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
August 6, 2026 at 7:53 AM
valebodi.bsky.social
@decodemestudy.bsky.social created the world’s largest ME/CFS study, and we are proud to take the next step with SequenceME. Using Oxford Nanopore’s any-length read sequencing technology, this project will uncover genetic insights that could transform www.actionforme.org.uk/news/sequenc...
SequenceME: first of a kind genetic study
Find out about SequenceME, a first of a kind study to uncover genetic causes of ME
www.actionforme.org.uk
December 20, 2024 at 4:09 PM
mecfsscience.org
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...
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...
www.actionforme.org.uk
August 7, 2025 at 8:05 AM
me-cfs.bsky.social
Action for ME has just announced a follow-up to the DecodeME study that will analyse the whole genome of around 17,000 participants. This is really exciting, and might result with some really interesting data.

www.actionforme.org.uk/news/sequenc...
SequenceME: first of a kind genetic study
Find out about SequenceME, a first of a kind study to uncover genetic causes of ME
www.actionforme.org.uk
December 16, 2024 at 10:35 AM
marlouvg.bsky.social
As someone living with the devastation that’s #ME, this study by #Edinburgh university and #Oxford gives so much hope. Please help spread the word, this study needs funding. Please help #DecodeME #SequenceME #NEISvoid #LongCovid
SequenceME: first of a kind genetic study
Find out about SequenceME, a first of a kind study to uncover genetic causes of ME
www.actionforme.org.uk
December 16, 2024 at 2:50 PM
tomkindlon.bsky.social
The #DecodeME study only looked at a subset of the total DNA. The same research team would like to deeper with a study called #SequenceME but unfortunately need significant funds to do this. Fingers crossed it happens. 🤞 #MEcfs #CFS #PwME
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Dec 23
SequenceME: first of a kind genetic study

www.actionforme.org.uk/news/sequenc...

Image is from Science for ME weekly update

#MEcfs #CFS #pwme
UK SequenceME: first of a kind genetic study "SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME ... The project builds on the DecodeME study, the world’s largest genetic study of ME led by the University of Edinburgh and Action for ME, which investigated whether common genetic variants were more likely to appear in those with ME than those without the condition. Over 17,000 participants who donated saliva samples to DecodeME have consented to further analysis and he SequenceME partners will seek to analyse them all." The project team are seeking £7 million to analyse the first 10,000 samples.
August 6, 2025 at 7:52 PM
me-cfs.bsky.social
One of the best chances we have at confirming this finding is SequenceME.

Here’s a fundraising link for those interested:

bsky.app/profile/tomk...
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Mar 29
A UK man with ME is fundraising for SequenceME, a deeper look at the DecodeME samples (whole-genome sequencing study).

www.justgiving.com/page/gregsan...

Screenshot is extract from his story where he argues there has been a lack of investment in research

#MEcfs #PwME #ME #MyalgicE
That puts the annual bill at around £4 billion. That's a ratio of roughly 3,000 to 1: for every £3,000 spent managing the consequences of ME, about £1 goes towards understanding or treating it. The government itself has acknowledged that ME is an underfunded research area. And with ME rates rising since Covid, that benefits bill is only going up. Decades of the illness being wrongly characterised as psychological — something now emphatically rejected by the 2021 NICE guidelines for ME/CFS — catastrophically held back biomedical research and left patients fighting for basic recognition. But the science is finally moving, and there are finally good reasons for hope. SequenceME will sequence the entire genome of 18,000 people with ME and Long Covid — potentially the world's largest 'long-read' whole-genome study of any disease. Building on the landmark DecodeME study (which identified eight genetic signals confirming ME involves the immune and nervous systems), it could identify the biological mechanisms driving ME and point directly towards treatments. Phase 1 is funded and a pilot has successfully proven the method works. The next phase — sequencing 10,000 participants — needs £7 million, and the full study will cost £20 million. Donations to this Just Giving crowdfunder will go towards SequenceME, through Action for ME, a UK charity (Gift Aid eligible). In Norway, ResetME is a placebo-controlled trial of a drug called daratumumab that showed remarkable results in a pilot study — 6 out of 10 patients markedly improved. It's being funded almost entirely by patients and their families, because public funders won't step up and the drug manufacturer won't offer a discount. You can contribute to ResetME here - https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/ The single most effective thing you can do right now is to help fund high-quality biomedical research, and encourage others to do the same
May 4, 2026 at 10:24 AM
mecfsscience.org
1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government.

It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.
June 2, 2026 at 7:44 AM
tomkindlon.bsky.social
Some info on #SequenceME, an exciting research project that wishes to use in a different way the samples collected for DecodeME

People can financially support such research here:
www.actionforme.org.uk/research-cam...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
SequenceME: partnering for potential Together with Oxford Nanopore Technologies and the University of Edinburgh, we are seeking to secure funding for an exciting new study. Should funding be successful, the SequenceME study aims to build on the DecodeME project and will analyse the genetic code of up to 17,000 people with ME. It would seek to uncover the root causes of ME and to determine whether ME is one illness or an umbrella condition encapsulating multiple diseases, such as long Covid and other chronic conditions. The research team would use advanced whole genome sequencing technology to look at every location in the threebillion- letter genome, enabling the identification of rare genetic variants (small changes to DNA sequence) and structural variations. This detailed picture would help researchers advance the biological understanding of ME with more precision and lay the foundation for progress in diagnosis and treatment. By advancing understanding of this complex and debilitating illness, the study has the potential to deliver profound health, social, and economic benefits, from reducing the strain on healthcare systems to empowering patients with personalised treatments and plans. SequenceME would be the first genetics study in ME to use Oxford Nanopore’s new generation of nanopore-based technology. “DecodeME created the world’s largest ME/CFS study, and we are proud to take the next step with SequenceME,” says Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies. “Using Oxford Nanopore’s any-length read sequencing technology, this project will uncover genetic insights that could transform patient care and open the door to personalised medicine for those living with ME.” “The SequenceME study will focus in its initial phase on severe and very severe cases of ME, ensuring that the people who live with its most devastating impacts are central to advancing understanding and driving meaningful change,” explains our CEO, Sonya Chowdhury. We will keep you upda…
October 26, 2025 at 6:56 PM
mecfsscience.org
2) In the UK, the government invested £4.75 million in SequenceME. It will measure the whole genome of thousands ME/CFS patients in high resolution so that rare mutations can be found.
bsky.app/profile/mecf...
mecfsscience.org ME/CFS Science @mecfsscience.org · Jun 2
1) In this interview with David Tuller, Prof. Chris Ponting gave more info about the SequenceME & Long Covid project that received £4.75 million from the UK government.

It will measure the whole genome of ME/CFS patients in high resolution so that rare mutations can be found.
July 5, 2026 at 10:11 AM
abrokenbattery.bsky.social
Channel 4 coverage of the new £4.75M UK government funding for SequenceME.

“For decades, many people with ME have been told it is in their heads… But now, a new project will look for the answer in our very DNA, with the world’s first genomic study into ME.” #MECFS
May 13, 2026 at 5:55 AM
tessamunt.bsky.social
Congrats to all involved in securing this critical funding!

However, I understand that it is only sufficient for the next phase with a further £15m needed for all that is envisaged. SequenceME is reliant on charities and personal donations to fundraise for this.

Sonya Chowdhury called it well…
actionforme.bsky.social Action for ME @actionforme.bsky.social · May 12
🚨 Major funding secured for Sequence ME & Long Covid, a DecodeME project.

On #WorldMEDay, we’re thrilled to share that the study has received £4.75 million from the UK government, signalling a transformative step towards uncovering the biological roots of ME/CFS and Long Covid.
May 13, 2026 at 6:42 PM
roberthmcmullen.bsky.social
This is very positive news. SequenceME is trying to secure funding for a study which will analyse the entire genetic code of up to 17,000 people with ME/CFS in a bid to uncover the genetic causes of the illness.

www.actionforme.org.uk/news/sequenc...
SequenceME: first of a kind genetic study
Find out about SequenceME, a first of a kind study to uncover genetic causes of ME
www.actionforme.org.uk
December 17, 2024 at 5:51 PM
tomparsons.bsky.social
Every day with the severe form this illness is like living a nightmare. Sometimes it's bearable, sometimes it's horrendous. But it's never ok.

The UK government must fully fund SequenceME, commit to a wider biomedical MECFS research program and cease funding psychobehavioural MECFS research.
August 8, 2026 at 1:48 PM
somethingchronic.bsky.social
Anyone know if a crowdfunding has been started anywhere yet?

Let’s help get the #SequenceME research underway asap!!

#DecodeME #ME/CFS #SevereME #LongCovid
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Aug 6
The #DecodeME study only looked at a subset of the total DNA. The same research team would like to deeper with a study called #SequenceME but unfortunately need significant funds to do this. Fingers crossed it happens. 🤞 #MEcfs #CFS #PwME
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Dec 23
SequenceME: first of a kind genetic study

www.actionforme.org.uk/news/sequenc...

Image is from Science for ME weekly update

#MEcfs #CFS #pwme
August 6, 2025 at 8:07 PM
tomkindlon.bsky.social
Webinar: SequenceME & Long Covid Phase 2 funding, May 26, 2026 02:30 PM BST

This webinar will explain the project, what this latest funding enables, and plans for the future. Registration link shows time in your time zone.

us02web.zoom.us/webinar/regi...

#MEcfs #LongCovid #pwme
Welcome! You are invited to join a webinar: SequenceME & Long Covid Announcement . After registering, you will receive a confirmation email about joining the webinar.
Welcome! You are invited to join a webinar: SequenceME & Long Covid Announcement . After registering, you will receive a confirmation email about joining the webinar.
us02web.zoom.us
May 19, 2026 at 11:03 PM
decodemestudy.bsky.social
DecodeME looks forward to working with the SequenceME partnership on this exciting project. We hope they receive the required funding soon and look forward to receiving their data access application. We are also open to other data access requests, and our process for this can be found on our website
actionforme.bsky.social Action for ME @actionforme.bsky.social · Dec 16
1/2

🚨 SequenceME

A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.

Read more 👇

www.actionforme.org.uk/news/sequenc...

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch
News announcement image with a DNA strand in the background. Text reads: ‘First of a kind study to uncover genetic causes of ME.’ Includes logos for Action for ME, The University of Edinburgh, Edinburgh Innovations, and Oxford Nanopore Technologies. Bottom corner has a QR code with labels ‘Our news’ and ‘Research.’ A quote from Sonya Chowdhury, CEO of Action for ME, emphasises that the collaboration centres people with lived experience of ME. The initial study phase focuses on severe cases, ensuring those most affected play a key role in advancing understanding and driving meaningful change. A quote from Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies, highlights DecodeME as the largest ME/CFS study. He states the next step, SequenceME, uses Oxford Nanopore’s sequencing technology to uncover genetic insights, improving care and enabling personalised medicine for people with ME. A quote from Professor Chris Ponting of the University of Edinburgh, emphasising the opportunity of SequenceME to utilise world-class technology to address the medical puzzle that is ME, building on the work of DecodeME.
December 16, 2024 at 11:35 AM
tomkindlon.bsky.social
SequenceME: first of a kind genetic study

www.actionforme.org.uk/news/sequenc...

Image is from Science for ME weekly update

#MEcfs #CFS #pwme
UK SequenceME: first of a kind genetic study "SequenceME will bring together experts from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME, to uncover the root causes of ME ... The project builds on the DecodeME study, the world’s largest genetic study of ME led by the University of Edinburgh and Action for ME, which investigated whether common genetic variants were more likely to appear in those with ME than those without the condition. Over 17,000 participants who donated saliva samples to DecodeME have consented to further analysis and he SequenceME partners will seek to analyse them all." The project team are seeking £7 million to analyse the first 10,000 samples.
December 23, 2024 at 8:19 PM
actionforme.bsky.social
1/2

🚨 SequenceME

A groundbreaking partnership has launched today, bringing together experts from Action for ME, Oxford Nanopore Technologies & the University of Edinburgh.

Read more 👇

www.actionforme.org.uk/news/sequenc...

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #MEResearch
News announcement image with a DNA strand in the background. Text reads: ‘First of a kind study to uncover genetic causes of ME.’ Includes logos for Action for ME, The University of Edinburgh, Edinburgh Innovations, and Oxford Nanopore Technologies. Bottom corner has a QR code with labels ‘Our news’ and ‘Research.’ A quote from Sonya Chowdhury, CEO of Action for ME, emphasises that the collaboration centres people with lived experience of ME. The initial study phase focuses on severe cases, ensuring those most affected play a key role in advancing understanding and driving meaningful change. A quote from Dr Gordon Sanghera, CEO of Oxford Nanopore Technologies, highlights DecodeME as the largest ME/CFS study. He states the next step, SequenceME, uses Oxford Nanopore’s sequencing technology to uncover genetic insights, improving care and enabling personalised medicine for people with ME. A quote from Professor Chris Ponting of the University of Edinburgh, emphasising the opportunity of SequenceME to utilise world-class technology to address the medical puzzle that is ME, building on the work of DecodeME.
December 16, 2024 at 9:30 AM
mecfsscience.org
5) Luis Nacul's talk will focus on Low-dose naltrexone in Long Covid (he's one of the researchers doing a trial on this).

Ponting will talk about DecodeME, hopefully we'll get an update about the SequenceME as well which plans to look at rare DNA variants.
April 28, 2026 at 8:13 AM
mecfsscience.org
9) The authors argue that their findings warrant replication in larger cohorts.

Don't think that GWAS studies like DecodeME have sufficient info on this because KIR genes are highly polymorphic and thus quite difficult to analyse. Perhaps something for SequenceME to look into.
September 7, 2025 at 9:30 AM
mecfsscience.org
4) The question for SequenceME is: Are there genes that are commonly broken in people with ME/CFS that increase the risk of the disease?

Answering this question will provide stronger evidence that may help to identify different types of ME/CFS and targeted treatments.
June 2, 2026 at 7:44 AM
mecfsscience.org
10) There's also a webinar on the project on 26 May, organized by Action for ME. You can register for it here:
Welcome! You are invited to join a webinar: SequenceME & Long Covid Announcement . After registering, you will receive a confirmation email about joining the webinar.
Welcome! You are invited to join a webinar: SequenceME & Long Covid Announcement . After registering, you will receive a confirmation email about joining the webinar.
us02web.zoom.us
May 13, 2026 at 8:08 AM
Hopefully sequenceME will get funded. The aim is to be 9000 cases which is a very large wgs
study.
August 14, 2025 at 5:20 AM