DecodeME the ME/CFS Study

@DecodeMEstudy

The world's largest study ever into #MEcfs. #pwME #DecodeMEStudy #pwME #MillionsMissing

United Kingdom

decodeme.ed.ac.uk

Joined November 2019

2KPosts 8KFollowers 672Following

You might like

@MEResearchUK

@DafoeWhitney

@CortJohnson

@mecfsbiobank

@BatemanHorne

@MEActNetUK

@OpenMedF

@JanetDafoe

@PlzSolveCFS

@MEActNet

@LBatemanMD

@keithgeraghty

@MEAssociation

@PhysiosForME

@benh_mecfs

Pinned

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 6

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

DecodeMEstudy's tweet image. Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

DecodeME the ME/CFS Study reposted

ME Association

@MEAssociation

Aug 29

The ME Association are pleased to announce that we have awarded .@DecodeMEstudy the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study. Find out more: meassociation.org.uk/ir3e #MECFS #pwME #SevereME #MyalgicE #DecodeME…

MEAssociation's tweet card. The ME Association are pleased to announce that we have […]

The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association

Source: meassociation.org.uk

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 29

As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media. Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 29

If you took part in DecodeME, your data will continue to be held securely by Edinburgh Uni. To update your details/ consent, please email [email protected]. For general info or support, please contact Action for ME at [email protected] or 0117 927 9551.

DecodeMEstudy's tweet image. If you took part in DecodeME, your data will continue to be held securely by Edinburgh Uni.

To update your details/ consent, please email decodeme@ed.ac.uk.

For general info or support, please contact Action for ME at infosupport@actionforme.org.uk or 0117 927 9551.

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 28

We shared our initial DNA results over the past few weeks to a wonderful response & widespread media coverage. Now, we are moving into the next phase of the study & have updates to share. Check out our blog post to find out what’s next for DecodeME: shorturl.at/Y1hXm

DecodeMEstudy's tweet image. We shared our initial DNA results over the past few weeks to a wonderful response &amp; widespread media coverage. Now, we are moving into the next phase of the study &amp; have updates to share.

Check out our blog post to find out what’s next for DecodeME:
shorturl.at/Y1hXm

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 28

Interested in supporting future ME/CFS research? @EdinburghUni & @actionforme are expanding on DecodeME’s research through projects like SequenceME & Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9

DecodeMEstudy's tweet image. Interested in supporting future ME/CFS research? @EdinburghUni &amp; @actionforme are expanding on DecodeME’s research through projects like SequenceME &amp; Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 27

Check out @davidtuller1 's interview with DecodeME investigator Prof Chris Ponting to hear more about our Initial DNA results.⬇️ youtu.be/CGUmcB_YIaA?si…

DecodeMEstudy's tweet card. Interview with Professor Chris Ponting about the DecodeME results.

youtube.com

YouTube

Interview with Professor Chris Ponting about the DecodeME results.

Source: youtube.com

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 27

Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb

DecodeMEstudy's tweet image. Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 22

As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information. You can find our new website here: decodeme.ed.ac.uk

DecodeMEstudy's tweet image. As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information.

You can find our new website here: decodeme.ed.ac.uk

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 22

“This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for pwME, & their families & carers.” -Claire Tripp, DecodeME PPI. A huge thanks to our participants & supporters for making DecodeME possible.

DecodeMEstudy's tweet image. “This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for pwME, &amp; their families &amp; carers.” -Claire Tripp, DecodeME PPI.

A huge thanks to our participants &amp; supporters for making DecodeME possible.

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 22

Check out The Guardian’s Science Weekly podcast on ‘Can science crack the mystery of ME?’ to hear scientists discuss ME/CFS and to hear from Nicky, a DecodeME participant. theguardian.com/science/audio/…

DecodeMEstudy's tweet card. Madeleine Finlay speaks to science editor Ian Sample about a new study of how genes affect people’s chances of developing ME/CFS, and to Nicky Proctor who has ME and took part in the research. She...

Can science crack the mystery of ME? – podcast

Source: theguardian.com

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 20

"Knowing that my DNA was a part of this study gives me a real sense of being part of something that is both exciting and could be the start of real change" We are incredibly grateful to every DecodeME participant. We would not be where we are today without you – thank you.

DecodeMEstudy's tweet image. "Knowing that my DNA was a part of this study gives me a real sense of being part of something that is both exciting and could be the start of real change"

We are incredibly grateful to every DecodeME participant. We would not be where we are today without you – thank you.

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 18

(2/2)

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 18

(1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.

DecodeMEstudy's tweet image. (1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs &amp; articles. A huge thanks to those who helped spread the word &amp; have helped us put ME/CFS research into the public eye.

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 18

“I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate and proud that we are at the forefront of scientific research into this debilitating illness." - Sian Leary, DecodeME PPI

DecodeMEstudy's tweet image. “I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate and proud that we are at the forefront of scientific research into this debilitating illness." - Sian Leary, DecodeME PPI

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 15

“DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)

DecodeMEstudy's tweet image. “DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 14

See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy as well as recording it so that you can watch it back.

DecodeMEstudy's tweet image. See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy
as well as recording it so that you can watch it back.

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 13

Together we’ve marked a turning point, and on behalf of the DecodeME team - thank you 🙏

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 13

Join us TOMORROW for our genetic results webinar! Register here: shorturl.at/fnB67 There are limited spots to join on Zoom (registering does not guarantee a spot). Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time.

DecodeMEstudy's tweet image. Join us TOMORROW for our genetic results webinar!

Register here: shorturl.at/fnB67

There are limited spots to join on Zoom (registering does not guarantee a spot). Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time.

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 12

“These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.” - Sonya Chowdhury Find out how to support future research that builds upon DecodeME: shorturl.at/uO75u

DecodeMEstudy's tweet image. “These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.” - Sonya Chowdhury

Find out how to support future research that builds upon DecodeME: shorturl.at/uO75u

DecodeME the ME/CFS Study

@DecodeMEstudy

Aug 12

"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM