@decodemestudy.bsky.social
🧬 The world’s biggest study of genetic causes of #MECFS. Launched September 2022. 🧬 https://www.decodeme.org.uk/
Thank you to the thousands of people with Severe ME who have taken the time and energy to participate in DecodeME #SevereMEDay
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.
X marks the spot where ME/CFS biology can be discovered. The science behind the findings blog post.
'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
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
After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...
07.08.2025 09:02 — 👍 20 🔁 9 💬 0 📌 0
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’.
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06.08.2025 19:06 — 👍 119 🔁 59 💬 1 📌 5
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.
(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
Scientists find link between genes and ME/chronic fatigue syndrome
06.08.2025 18:15 — 👍 307 🔁 152 💬 11 📌 24
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.
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
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’.
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.
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'
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.
28.05.2025 08:00 — 👍 60 🔁 19 💬 3 📌 4
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'.
"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.
14.05.2025 10:56 — 👍 14 🔁 2 💬 1 📌 0
DecodeME graphic. At the top left hand corner of the graphic is the DecodeME logo. Beneath this is an image of Sian. She has blonde hair, fair skin, wears glasses and grins. Beneath this image it says 'Sian Leary, DecodeME PPI'. To the right of the picture is a quote from Sian: "This World ME Day, I reflect with pride on the Patient and Public Involvement (PPI) at the core of DecodeME. This is research done differently - because we deserve better.' Beneath this: 'proudly supporting World ME Day'
This World ME Day, I reflect with pride on the Patient and Public Involvement (PPI)..this is research done differently – because we deserve better.” - Sian Leary, DecodeME PPI. Our PPI group is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.
13.05.2025 08:09 — 👍 21 🔁 4 💬 1 📌 1
On #MECFSAwareness day, @cgatist.bsky.social talks about why we need more funding for research into Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome to help people living with this disease. @decodemestudy.bsky.social
media.ed.ac.uk/media/Decode...
Below is a graphic for World ME Day. At the top right hand corner is the DecodeME logo. At the centre of the image is a quote from Professor Chris Ponting: "DecodeME is not just the world's largest study of the genetic causes of ME, but it was the first to place people with experience of ME at its heart. A total of 27,000 people with ME took part. At the bottom centre of the image in white it says 'proudly supporting World ME Day'.
This #WorldMEday we want to take a pause & recognise the challenges, stigma & neglect that many #pwME face. We hope that #DecodeME can pave the way forward in accelerating research into M.E./CFS & will help to set a standard in research to include voices of pw lived experiences.
12.05.2025 12:43 — 👍 35 🔁 16 💬 0 📌 0TW: Severe M.E.
“the data backs up what many people with ME/CFS say: that they feel invisible and ignored.”
Please note that this article is behind a paywall.
We’re the world's largest genetic study of ME/CFS. We’ll be sharing our findings on here when available, so follow DecodeME to find out more about our study in the meantime, and help our science reach more people in the #MECFS community.
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#DecodeME #MECFS #pwME #myalgicencephalomyelitis
Graphic with dark blue background. At the top left hand corner is the DecodeME logo. Beneath this is a screenshot from the article, with the front cover a picture of someone beneath white bedding with their face and arm peeking out, and beneath this is the headline ‘Long Covid in its worst form’ and the subheading ‘Chronic fatigue syndrome affects millions of people and has been known for a long time. But patients were psychologized, stigmatized and treated incorrectly. It was only Long Covid that brought about a rethink. By Theres Lüthi, 08.01.2025’. Next to the screenshot of the article is a quote saying "What the research field now needs most urgently, says Ponting, is a robust scientific foundation... DecodeME, the largest ME/CFS study to date, is now taking a step in this direction in Great Britain”.
"What the research field now needs most urgently, says Ponting, is a robust scientific foundation…DecodeME, the largest ME/CFS study to date, is now taking a step in this direction in Great Britain" shorturl.at/VJj06
To read in English, open in Chrome & use the translate function.
Graphic with dark blue background. At the top right is a green DNA helix. At the top centre of the graphic is the DecodeME logo and beneath it says ‘would like to wish you a’ in light beige writing, and beneath this is a green circle that says ‘Happy New Year’ in white lettering in it. At the bottom of the graphic in white lettering it says ’Thank you for supporting the study, we couldn’t do it without you!’
Happy New Year from #DecodeME. We're sending our best to you and your loved ones for the year ahead. We are now deep into the exciting stage of analysing the DecodeME data, and anticipate the initial DNA results to be available by the middle of 2025. #DecodeME #MECFS #pwME
06.01.2025 13:50 — 👍 17 🔁 5 💬 1 📌 0
Graphic with a light cream background. At the top left hand corner are green, silver and black snowflakes. At the top right hand corner is a green DNA helix. At the top centre of the graphic it says 'Have a wonderful Festive Season! DecodeME is' in navy lettering and beneath it in a green circle 'Closed for Holidays' in black writing. At the bottom centre of the graphic it says 'from 20th Dec to 6th Jan'. At the bottom right is the DecodeME logo and at the bottom left is a green DNA helix.
#DecodeME is now closed for the holidays until 6th Jan! Thank you for everything you have helped us achieve together this year & for your continued support. We are now deep into the exciting stage of analysing the data and anticipate the DNA analysis to be complete by the middle of 2025 #MECFS #pwME
20.12.2024 13:51 — 👍 13 🔁 0 💬 0 📌 0DecodeME 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
16.12.2024 11:35 — 👍 29 🔁 5 💬 0 📌 2
Graphic with a dark blue background. In the centre in a green circle it says ‘Thank you!’ In black lettering. At the bottom of the graphic it says ‘for everything we’ve achieved together in 2024’ in white lettering. At the top left of the graphic is the UKbiocentre and Thermofisher logo, beneath this it says ‘All of your DNA samples, over 18,000 of them, have now been processed and the genetic information received by the team.’ Next to this is a picture of a questionnaire, and beneath it says ‘Over 15,000 participants completed and returned the 2nd questionnaire.’ Next to this is an image of a black magnifying glass and a graph and underneath it says ‘We cleaned and prepared the sample data for analysis.’ Underneath this is an image of a green double helix and beneath this it says ‘We opened data access to other researchers.’ To the centre left of the graphic is a magnifying glass with a graph in it and beneath it says ‘We are deep into analysing the DNA data and comparing it to healthy controls.’
We’d like to say a HUGE thank you to everyone for helping us achieve so much this year. You have helped us create the largest cohort of ME/CFS in the world & we're now deep into analysing the data! We anticipate the DNA analysis to be complete by the middle of next year. #DecodeME #MECFS #pwME
13.12.2024 12:28 — 👍 41 🔁 16 💬 0 📌 0
A pretend polaroid shows a very Christmassy Chris Ponting posing for a photo holding a #ThereForME Christmas card. He is wearing a very fetching Santa hat and a tinsel garland The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "11". The design is in the #ThereForME colours.
This second image displays Chris’s handwritten message. It reads “My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
TW: Severe ME
“People’s lives have been blighted by this disease... they cannot get the care that they deserve and that they need.” - Prof Chris Ponting, DecodeME Investigator.
To hear from those whose family has been most affected by severe ME, watch below ⬇️
news.sky.com/video/in-ful...
Graphic with yellowy beige background. At the top left there is the DecodeME logo, at the top right are dark blue and green baubles. At the top centre it says ‘Supporting someone with ME’. Beneath this it says ‘Remember to check in on your friend/ family member with ME this festive season and see what would be most helpful and comforting for them.’ Underneath this it lists suggestions to do this, including: Go shopping, call or text them to let them know you’re here for them, cook them a warming meal, keep including them in your plans even if they have to decline most of the time and sit with them quietly.
This festive season, we’d like to encourage those with a loved one w/ME to gift an act of kindness. Ask what would be most helpful and comforting to them, what may seem small to you could be immensely helpful & meaningful to someone living with ME #DecodeME #RandomActsOfKindness
10.12.2024 16:16 — 👍 30 🔁 12 💬 0 📌 1
