#sequenceme — Public Fediverse posts

Video about DecodeME from the International ME/CFS Conference 2026. About 23 minutes.

https://www.youtube.com/watch?v=SrPWY9v22W4

"Prof. Dr. Chris Ponting presented findings from DecodeME, the largest ME/CFS genome-wide association study (GWAS) to date (over 20,000 participants), confirming the disease is polygenic with heritability concentrated in neural tissues and showing genetic overlap with fibromyalgia."

@mecfs

#MEcfs #LongCovid #Fibromyalgia #DecodeME #SequenceME #Genetics

Video about DecodeME from the International ME/CFS Conference 2026. About 23 minutes.

https://www.youtube.com/watch?v=SrPWY9v22W4

"Prof. Dr. Chris Ponting presented findings from DecodeME, the largest ME/CFS genome-wide association study (GWAS) to date (over 20,000 participants), confirming the disease is polygenic with heritability concentrated in neural tissues and showing genetic overlap with fibromyalgia."

@mecfs

#MEcfs #LongCovid #Fibromyalgia #DecodeME #SequenceME #Genetics

🚨 Tomorrow, Wed, June 10
2 pm Eastern / 11 am Pacific

Free webinar from Solve ME on Sequence ME & Long Covid research study

"The Search for ME/CFS and Long Covid Biomarkers and Subtypes"

More details here:
https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

Registration link:
(shows time in your time zone)
https://us02web.zoom.us/webinar/register/WN_nEjvCzlPQBOMFrr5f5ULuw#/registration

@mecfs @longcovid

#MEcfs #LongCovid #PostCovid #CovidIsNotOver #DecodeME #SequenceME #SolveME

🚨 Tomorrow, Wed, June 10
2 pm Eastern / 11 am Pacific

Free webinar from Solve ME on Sequence ME & Long Covid research study

"The Search for ME/CFS and Long Covid Biomarkers and Subtypes"

More details here:
https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

Registration link:
(shows time in your time zone)
https://us02web.zoom.us/webinar/register/WN_nEjvCzlPQBOMFrr5f5ULuw#/registration

@mecfs @longcovid

#MEcfs #LongCovid #PostCovid #CovidIsNotOver #DecodeME #SequenceME #SolveME

RE: https://trialbyerror.org/2026/05/31/interview-with-chris-ponting-about-sequence-me-long-covid/

I have not watched this interview with Chris Ponting yet, but David Tuller always does good interviews!

On the Science for ME forum there are some interview highlights written by one of the forum members:

https://s4me.info/threads/sequenceme-genetic-study-from-oxford-nanopore-technologies-the-university-of-edinburgh-and-action-for-me.41663/page-13#post-696558

#MEcfs #LongCovid #SequenceME #DecodeME #Genetics #DNA #Science4ME

RE: https://trialbyerror.org/2026/05/31/interview-with-chris-ponting-about-sequence-me-long-covid/

I have not watched this interview with Chris Ponting yet, but David Tuller always does good interviews!

On the Science for ME forum there are some interview highlights written by one of the forum members:

https://s4me.info/threads/sequenceme-genetic-study-from-oxford-nanopore-technologies-the-university-of-edinburgh-and-action-for-me.41663/page-13#post-696558

#MEcfs #LongCovid #SequenceME #DecodeME #Genetics #DNA #Science4ME

'Publication?'
Currently working on publication for DecodeME results.

'Was everyone in DecodeME medically diagnosed with ME/CFS?'
Yes. Which can be seen in the genetic similarities of the results.

'Recruitment of people with LC' (I asked one of these questions and we were actually asking about how to express interest, not about the actual recruitment.)
Haven't set recruitment requirements, so no answer yet, but there will be more seminars.

#SequenceME

'Publication?'
Currently working on publication for DecodeME results.

'Was everyone in DecodeME medically diagnosed with ME/CFS?'
Yes. Which can be seen in the genetic similarities of the results.

'Recruitment of people with LC' (I asked one of these questions and we were actually asking about how to express interest, not about the actual recruitment.)
Haven't set recruitment requirements, so no answer yet, but there will be more seminars.

#SequenceME

>Thinking about whether they should do a separate seminar on that.

'What the letters are in the presentation (DNA?)'
The 4 letters are the initials of the chemicals in DNA, methyalation is 'non-inherited' part of the gene - on the C letter.

'Is there a chance to learn about PEM from methylation?'
Probably not. We don't know what people's PEM status was on giving their sample. More interested in the 4 letters, not methylation.

#SequenceME

>Thinking about whether they should do a separate seminar on that.

'What the letters are in the presentation (DNA?)'
The 4 letters are the initials of the chemicals in DNA, methyalation is 'non-inherited' part of the gene - on the C letter.

'Is there a chance to learn about PEM from methylation?'
Probably not. We don't know what people's PEM status was on giving their sample. More interested in the 4 letters, not methylation.

#SequenceME

'How deliver results?'
TBD, but we want to get those to the community ASAP.

Scientist says he doesn't want to 'silence' but convince people with evidence.

'Was data for the pilot project published?'
No, because it's just a pilot.

'Will we find out if our DecodeME sample is being used for SequenceME?'
No because it's anonymised.

'Lots of questions about campaigning to gov'
Work with various groups.
Encourage your MP to go to all party parliamentary meetings.
#SequenceME

'How deliver results?'
TBD, but we want to get those to the community ASAP.

Scientist says he doesn't want to 'silence' but convince people with evidence.

'Was data for the pilot project published?'
No, because it's just a pilot.

'Will we find out if our DecodeME sample is being used for SequenceME?'
No because it's anonymised.

'Lots of questions about campaigning to gov'
Work with various groups.
Encourage your MP to go to all party parliamentary meetings.
#SequenceME

'Are you using AI?'
We already are - trying to do so ethically.
'Are there links to autism?'
We haven't looked at it yet, but it's somethign we hope to find out.
'Timescale?'
Can't answer. Will have data by end 2027, but don't know how long analysis will take. #SequenceME

'Are you using AI?'
We already are - trying to do so ethically.
'Are there links to autism?'
We haven't looked at it yet, but it's somethign we hope to find out.
'Timescale?'
Can't answer. Will have data by end 2027, but don't know how long analysis will take. #SequenceME

'What are you most excited about?' (Question put to everyone, but I've not captured names)
A: Continuing to build on the achievement that DecodeME was.
A: Exited to get more funders.
A: getting answers - ME has too many questions.
A: Dispelling myths and silencing harmful actors who encourage those.

#SequenceME

'What are you most excited about?' (Question put to everyone, but I've not captured names)
A: Continuing to build on the achievement that DecodeME was.
A: Exited to get more funders.
A: getting answers - ME has too many questions.
A: Dispelling myths and silencing harmful actors who encourage those.

#SequenceME

Link to find out more and donate: https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/donate-sequence-me/ #SequenceME

Link to find out more and donate: https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/donate-sequence-me/ #SequenceME

If you donate a sample, you can give your consent for your your sample to be used in other reasearch.

EBI will be doing the analysis, with funds we've yet to secure.

Going into Q&A. #SequenceME

If you donate a sample, you can give your consent for your your sample to be used in other reasearch.

EBI will be doing the analysis, with funds we've yet to secure.

Going into Q&A. #SequenceME

They're going to be sequencing each sample 30 times, for accuracy.

Will be able to identify not only rare genetic differences that relate to ME, but also those that relate to other conditions.

Look at whether structural/chromosomal differences have an impact.

Ask whether DNA methylation impacts the disease.

The had a successful pilot to show that these methods are relaible and effective.

#SequenceME

They're going to be sequencing each sample 30 times, for accuracy.

Will be able to identify not only rare genetic differences that relate to ME, but also those that relate to other conditions.

Look at whether structural/chromosomal differences have an impact.

Ask whether DNA methylation impacts the disease.

The had a successful pilot to show that these methods are relaible and effective.

#SequenceME

Support needed spread news within LC groups. Invite contributions and suggestions for partners for them to work with. Donations welcome.

If you have Long COVID, you can express interest now - I didn't get the link, but it should be on the Action for ME website.

[Edit: based on Q&A, they don't seem to have this yet]

#SequenceME

Support needed spread news within LC groups. Invite contributions and suggestions for partners for them to work with. Donations welcome.

If you have Long COVID, you can express interest now - I didn't get the link, but it should be on the Action for ME website.

[Edit: based on Q&A, they don't seem to have this yet]

#SequenceME

Funding slide: current state of affairs in phase 1. [Edit to add alt-text provided by @amenonsen ]

#SequenceME

Funding slide: current state of affairs in phase 1. [Edit to add alt-text provided by @amenonsen ]

#SequenceME

Currently mobilising the project, fundraising, and establishing criteria for long covid samples. #SequenceME

Currently mobilising the project, fundraising, and establishing criteria for long covid samples. #SequenceME

Current research based on DecodeME has not identified any gene that meets the threshold for prevalence - AstraZenica BTN2A1, but did not meet the threshold. SequenceME will enable this.

They estimate they will need £20million, looking for partnerships.

Need to recruit people with Long COVID. ATM gathering expressions of interest - will reach out to those people when they have identified the criteria. #SequenceME

Current research based on DecodeME has not identified any gene that meets the threshold for prevalence - AstraZenica BTN2A1, but did not meet the threshold. SequenceME will enable this.

They estimate they will need £20million, looking for partnerships.

Need to recruit people with Long COVID. ATM gathering expressions of interest - will reach out to those people when they have identified the criteria. #SequenceME

Pinpoint genes that primarily affect ME/CFS and have little impact on other traits.

Complimentary with the DecodeME analysis.

Genetic evidence is really important to the pharmaceutical industry and persuading them to test drugs.
#SequenceME

Pinpoint genes that primarily affect ME/CFS and have little impact on other traits.

Complimentary with the DecodeME analysis.

Genetic evidence is really important to the pharmaceutical industry and persuading them to test drugs.
#SequenceME

OK, so, SequenceME is going to look more widely than DecodeME. It will look at the whole genome, including rare variation and structural variation. #SequenceME

OK, so, SequenceME is going to look more widely than DecodeME. It will look at the whole genome, including rare variation and structural variation. #SequenceME

More #SequenceME news coverage:

"UK to sequence genomes of 6,000 ME/CFS patients for treatment clues"

https://www.pulsetoday.co.uk/news/clinical-areas/mental-health-pain-and-addiction/uk-to-sequence-genomes-of-6000-me-cfs-patients-for-treatment-clues/

"The work will build on the earlier DecodeME study, which created the world’s largest ME/CFS research cohort."

@mecfs

#MEcfs #PwME #Genetics #Research #DecodeME

More #SequenceME news coverage:

"UK to sequence genomes of 6,000 ME/CFS patients for treatment clues"

https://www.pulsetoday.co.uk/news/clinical-areas/mental-health-pain-and-addiction/uk-to-sequence-genomes-of-6000-me-cfs-patients-for-treatment-clues/

"The work will build on the earlier DecodeME study, which created the world’s largest ME/CFS research cohort."

@mecfs

#MEcfs #PwME #Genetics #Research #DecodeME

This blog post has a good overview of the project:

"DNA sequencing study to help pinpoint biology of ME gets £4.7m"

https://mecfsresearchreview.me/2026/05/12/dna-sequencing-study-to-help-pinpoint-biology-of-me-gets-4-7m/

@mecfs @longcovid

#MEcfs #LongCovid #SequenceME #DecodeME #Genetics #MedMastodon

This blog post has a good overview of the project:

"DNA sequencing study to help pinpoint biology of ME gets £4.7m"

https://mecfsresearchreview.me/2026/05/12/dna-sequencing-study-to-help-pinpoint-biology-of-me-gets-4-7m/

@mecfs @longcovid

#MEcfs #LongCovid #SequenceME #DecodeME #Genetics #MedMastodon

Check out the latest News in Brief (May 11 - 17) from the Science for ME forum. It's a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-693584

Good news - Major funding secured for Sequence ME & Long Covid research project!

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #SequenceME #DecodeME #Science4ME

Check out the latest News in Brief (May 11 - 17) from the Science for ME forum. It's a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-693584

Good news - Major funding secured for Sequence ME & Long Covid research project!

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #SequenceME #DecodeME #Science4ME

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of May 11 - 17.

https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-693584

Highlight: Major funding secured for Sequence ME & Long Covid! (DecodeMe project)

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #SequenceME #DecodeME

Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of May 11 - 17.

https://www.s4me.info/threads/news-in-brief-may-2026.50158/#post-693584

Highlight: Major funding secured for Sequence ME & Long Covid! (DecodeMe project)

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

@mecfs @longcovid

#MEcfs #PwME #LongCovid #PwLC #SequenceME #DecodeME

Free webinar on June 10:

https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

"… host Dr. Jessica Maya will talk to the DecodeME management team and recent Catalyst Award honorees Prof. Chris Ponting, Sonya Chowdhury, and Andy Devereux-Cooke about how their study could reveal many more genes, gene-regulation elements, and biological pathways that affect ME/CFS risk, advance efforts to identify new biomarkers for disease subtypes, and ultimately lead to new treatments."

@mecfs @longcovid

#DecodeME #SequenceME #MEcfs

Free webinar on June 10:

https://solvecfs.org/event/sequence-me-long-covid-the-search-for-me-cfs-and-long-covid-biomarkers-and-subtypes/

"… host Dr. Jessica Maya will talk to the DecodeME management team and recent Catalyst Award honorees Prof. Chris Ponting, Sonya Chowdhury, and Andy Devereux-Cooke about how their study could reveal many more genes, gene-regulation elements, and biological pathways that affect ME/CFS risk, advance efforts to identify new biomarkers for disease subtypes, and ultimately lead to new treatments."

@mecfs @longcovid

#DecodeME #SequenceME #MEcfs

Yesterday, as part of a long thread on ME/CFS Awareness Day, I posted that the SequenceME research project had gotten partial funding.

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

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

This is good news! 🎉 More funding is still needed, but this is a good start.

I'm re-posting today because it was buried in my long thread & may have been missed by a lot of folks.

@mecfs @longcovid

#MEcfs #LongCovid #Genomics #SequenceME #DecodeME #MedMastodon

Yesterday, as part of a long thread on ME/CFS Awareness Day, I posted that the SequenceME research project had gotten partial funding.

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

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

This is good news! 🎉 More funding is still needed, but this is a good start.

I'm re-posting today because it was buried in my long thread & may have been missed by a lot of folks.

@mecfs @longcovid

#MEcfs #LongCovid #Genomics #SequenceME #DecodeME #MedMastodon

More details about the Sequence ME and Long Covid research are in this government press release:

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

https://www.gov.uk/government/news/thousands-of-mecfs-patients-to-benefit-from-first-genomics-study

"…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."

20/n

@mecfs @longcovid

#MEcfs #LongCovid #SequenceME #DecodeME #Genomics #MedMastodon

More details about the Sequence ME and Long Covid research are in this government press release:

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

https://www.gov.uk/government/news/thousands-of-mecfs-patients-to-benefit-from-first-genomics-study

"…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."

20/n

@mecfs @longcovid

#MEcfs #LongCovid #SequenceME #DecodeME #Genomics #MedMastodon

Another way to help is to donate to the "Sequence ME & Long Covid" research project:

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/donate-sequence-me/

Action for M.E. just announced yesterday that this project got more funding! Read more about the project here:

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

19/n

@mecfs @longcovid

#MEcfs #LongCovid #MedMastodon #SequenceME #Research #ActionForME

Another way to help is to donate to the "Sequence ME & Long Covid" research project:

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/donate-sequence-me/

Action for M.E. just announced yesterday that this project got more funding! Read more about the project here:

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

19/n

@mecfs @longcovid

#MEcfs #LongCovid #MedMastodon #SequenceME #Research #ActionForME

RE: https://mas.to/@eleanorrees/116263420791396664

Donations requested for the #SequenceME genetic research project which builds on the #DecodeME research. Read more about the project here:

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

The JustGiving donation link is in the quoted post.

Thanks to @eleanorrees for setting up this donation page ❤️

And happy birthday! 🎉

@mecfs
@longcovid

#MEcfs #LongCovid #Research #MedMastodon #Fundraising

RE: https://mas.to/@eleanorrees/116263420791396664

Donations requested for the #SequenceME genetic research project which builds on the #DecodeME research. Read more about the project here:

https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/

The JustGiving donation link is in the quoted post.

Thanks to @eleanorrees for setting up this donation page ❤️

And happy birthday! 🎉

@mecfs
@longcovid

#MEcfs #LongCovid #Research #MedMastodon #Fundraising

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:
https://www.actionforme.org.uk/research-campaigns/our-research-work/decodeme-donate

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

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:
https://www.actionforme.org.uk/research-campaigns/our-research-work/decodeme-donate

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

If you'd like to support the researchers behind #DecodeME with other projects such as #SequenceME ( https://www.clinicalresearchnewsonline.com/cln/pressreleases/2024/12/18/oxford-nanopore-action-for-me-and-university-of-edinburgh-launch-groundbreaking-study-into-the-genetics-of-me ) , here's a donation link https://www.decodeme.org.uk/support-us/

Alternatively donate directly to Prof Ponting's #MECFS lab research
https://donate.ed.ac.uk/support/ME-CFSResearch

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

If you'd like to support the researchers behind #DecodeME with other projects such as #SequenceME ( https://www.clinicalresearchnewsonline.com/cln/pressreleases/2024/12/18/oxford-nanopore-action-for-me-and-university-of-edinburgh-launch-groundbreaking-study-into-the-genetics-of-me ) , here's a donation link https://www.decodeme.org.uk/support-us/

Alternatively donate directly to Prof Ponting's #MECFS lab research
https://donate.ed.ac.uk/support/ME-CFSResearch

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME