DecodeME
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decodemestudy.bsky.social
DecodeME
@decodemestudy.bsky.social
830 followers 6 following 37 posts
🧬 The world’s biggest study of genetic causes of #MECFS. Launched September 2022. 🧬 decodeme.ed.ac.uk
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decodemestudy.bsky.social
📢Action for ME has launched The Big Survey

We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research.

For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw
Text reads 'Take part in Action for ME's Big Survey. Help illustrate the impact of ME/CFS. Open until January 2026.' Text reads 'Action for ME is inviting UK-based people with ME/CFS, or long Covid with ME symptoms, to take part in The Big Survey. The Big Survey is held every 5-6 years. The last survey was completed by over 4000 people, and this year they would like to reach as many people as possible.' Text reads 'Data collected will be used to shape Action for ME's wider work (including research) and illustrate the impact of ME. Anonymised survey data will also be shared with Dr Audrey Ryback, University of Edinburgh, who will use the data to study the age of ME onset, triggers, and heritability.' Text reads ' The survey is open until 27th January 2026. More information is available on Action for ME's website. Thank you.'
October 21, 2025 at 2:21 PM
decodemestudy.bsky.social
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 graphic. In the centre it says 'Thank you' in white cursive writing and beneath it 'from DecodeME'.
August 29, 2025 at 10:25 AM
decodemestudy.bsky.social
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 graphic. In the centre it says 'Your data and consent. If you took part in DecodeME, your data will continue to be held securely by the University of Edinburgh. Any consents you gave, for wider use or recontact, remain valid'. Beneath this in a speech bubble it says 'To update your details or consent, please email decodeme.ed.ac.uk'.
August 29, 2025 at 10:06 AM
decodemestudy.bsky.social
We shared our initial DNA results over the past few weeks to a wonderful response and widespread media coverage. Now, we are moving into the next phase of the study and have some updates to share.

Check out our blog post to find out what’s next for DecodeME: shorturl.at/Y1hXm
DecodeME 'New Blog Post'. Titled: 'What's next for DecodeME?'. 'We shared our initial DNA results over the past few weeks to a wonderful response and widespread media coverage. Now, we are moving into the next phase of the study and have some updates to share.' There is an image of a scientist wearing goggles and pointing to a blackboard with a DNA helix.
August 28, 2025 at 1:09 PM
decodemestudy.bsky.social
Interested in supporting future ME/CFS research? @edinburgh-uni.bsky.social & @actionforme.bsky.social 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
Alt text: DecodeME post titled 'Support future ME/CFS research'. There is a picture of two hands and in between it is a green heart that says 'donate'. At the bottom of the graphic it says 'Donations will be used towards research projects such as the Genetics Centre of Excellence and Sequence ME and Long Covid.' Link in bio.
August 28, 2025 at 11:50 AM
decodemestudy.bsky.social
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 Results'. Post reads: 'Our Genetic Results webinar video and transcript are now available!'. Beneath this is an image of a clapperboard and an image of a transcript.
August 27, 2025 at 11:02 AM
decodemestudy.bsky.social
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
New website! DecodeME's website has moved to the University of Edinburgh's site. Find the link in our bio.
August 22, 2025 at 3:07 PM
decodemestudy.bsky.social
“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.
Image of Claire from DecodeME's PPI. Claire has fair skin, brown hair and is grinning. She is quoted saying "For DecodeME to show evidence validating ME as a physiological disease is enormously satisfying. My sense of pride and achievement at being part of this groundbreaking study is immeasurable. This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for people with ME, and their families and carers."
August 22, 2025 at 2:08 PM
decodemestudy.bsky.social
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Screenshot of BBC Radio 5. Beneath this it says BBC Radio 5 Live, 7th August. Screenshot of The Guardian article by Ian Sample, 6th of August with headline 'Scientists find link between genes and ME/chronic fatigue syndrome'. Screenshot of The Times article by David Leask, 7th of August with the headline 'Lack of ME research because of 'medical misogyny', says top scientist', please note that this article is behind a paywall. Screenshot of Science article by Catherine Offord, 6th of August with headline 'Possible genetic clues to ME/ chronic fatigue syndrome identified in massive study'. Screenshot of New Scientist article by Michael Marshall 6th of August with headline 'Key genetic differences found in people with chronic fatigue syndrome'. Please note that this article is behind a paywall.
August 18, 2025 at 3:36 PM
decodemestudy.bsky.social
(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.
News coverage. We have been blown away by the public interest in DecodeME's initial DNA findings. Please swipe to check out some of our press coverage. Links to full segments, interviews and articles will be in our bio. Screenshot of Prof Chris Ponting and DecodeME participant. Beneath this it says 'Channel 4 News at 7pm, 6th August'. Screenshot of BBC news reporter and Prof Chris Ponting. Beneath this it says BBC Scotland News at 7pm, 6th August. Screenshot of BBC Radio 4 Today. Beneath this it says BBC Radio 4 Today Program, 7th August.
August 18, 2025 at 3:35 PM
decodemestudy.bsky.social
“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
Photo of Sian Leary, from DecodeME patient and public involvement, next to the quote: "Having been on the Patient and Public Involvement Steering Group for the past 5 years, I want to celebrate this moment, but also to acknowledge the intense suffering pwME continue to endure. This study gives each of us validation that too often has been missing from healthcare professionals and close ones. We are a significant step closer to identifying the causes of ME, and to finding treatments."
August 18, 2025 at 10:41 AM
decodemestudy.bsky.social
“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)
Photo of Andy Devereux-Cooke, PPI member and Co-investigator, next to his quote: "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"
August 15, 2025 at 8:45 AM
decodemestudy.bsky.social
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.
August 14, 2025 at 12:52 PM
decodemestudy.bsky.social
Thank you for your response to our initial DNA results last week. We have been blown away by all your messages, support and kind words 🙏
August 13, 2025 at 4:00 PM
decodemestudy.bsky.social
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.
Genetic results webinar. Join us on Zoom or Facebook, Thursday 14th August 2025, 15:30-16:30 BST. Photos of the DecodeME management team.
August 13, 2025 at 9:26 AM
decodemestudy.bsky.social
"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
Image of Chris Ponting next to quote "This is a wakeup call. These extraordinary results speak the language of people with ME/CFS, often recounting people's ME/CFS symptoms. DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research"
August 12, 2025 at 10:11 AM
decodemestudy.bsky.social
Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME).

We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.
Thank you to the thousands of people with Severe ME who have taken the time and energy to participate in DecodeME #SevereMEDay
August 8, 2025 at 11:18 AM
decodemestudy.bsky.social
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.'

Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
X marks the spot where ME/CFS biology can be discovered. The science behind the findings blog post.
August 7, 2025 at 4:23 PM
decodemestudy.bsky.social
The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research.

A huge thanks to all our participants for giving their time, energy & DNA to the project.

Learn more about our findings: shorturl.at/XOVJ1
August 7, 2025 at 9:20 AM
decodemestudy.bsky.social
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Graphic 1 of 4. DecodeME: The Results graphic. The slide says: ‘The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes to this poorly understood disease’. Graphic 2 of 4. DecodeME: The Results graphic. The slide says: ‘At least two of the signals relate to the body’s response to infection’. Beneath this is an image of green germs. Graphic 3 of 4. DecodeME: The Results graphic. The slide says: ‘Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS’. Beneath this is an image of a person curled up in bed feeling ill. Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘All of these signals align with how people with ME/CFS describe their illness’.
August 6, 2025 at 7:06 PM
decodemestudy.bsky.social
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk
Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides. Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass. Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs. Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.
August 6, 2025 at 7:03 PM
decodemestudy.bsky.social
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
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Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
August 6, 2025 at 6:24 PM
decodemestudy.bsky.social
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx).

We're letting you know the timing in advance so you can pace beforehand.

Thank you to our participants & supporters.
Dark blue background with image of DNA helix. At the top of the DecodeME ‘the results’ logo. Two spotlights shine on a speech bubble that says ‘Initial DNA results’. To the right of this is an image of a research paper. At the bottom of the graphic it says ‘Wednesday 7pm BST’.
August 4, 2025 at 5:23 PM
decodemestudy.bsky.social
This week, the project team reached a significant milestone: we are into the final analysis stage which tests millions of DNA variants for their association to ME/CFS. Completion of the write-up and announcement of the results will follow as soon as possible.
The post reads: 'This week, the project team reached a significant milestone: we are into the final analysis stage which tests millions of DNA variants for their association to ME/CFS. Completion of the write-up and announcement of the results will follow as soon as possible. We are on target to deliver the results before the completion of the study in August and appreciate your continued patience and support. - DecodeME Team'
May 28, 2025 at 8:00 AM
decodemestudy.bsky.social
"Being part of DecodeME’s PPI Steering Group has given me the chance to turn my daughter’s life-altering illness into something purposeful…” - Claire Tripp, DecodeME PPI. Our PPI group is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.
At the top left hand corner is the DecodeME logo. Beneath this is an image of Claire. She has brown hair, fair skin and grins. Beneath this it says 'Claire Tripp, DecodeME PPI'. To the right of the picture "Being part of DecodeME’s PPI Steering Group has given me the chance to turn my daughter’s life-altering illness into something purposeful. When patients and carers are involved, research becomes not just more accessible - but more powerful. Beneath this: 'proudly supporting World ME Day'.
May 14, 2025 at 10:56 AM