#DecodeMe
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damnatusxoctavia.bsky.social
So what I'm reading is that my genes are COOKED 🍳But also unsurprised this is also the case for Fibro after the DecodeME study for ME/CFS also showed genetic commonalities with recognised pain disorder genes. I just hope soon the medical body will start recognising the existence of these illnesses.
bhanlon15.bsky.social Billy Hanlon @bhanlon15.bsky.social · 4d
Medical Republic: 'Fibromyalgia finally gets a genetic fingerprint'

'Additionally, certain risk loci overlapped with long covid (BPTF) and ME/CFS (OLFM4, RABGAP1L/GPR52), two poorly characterised disorders, albeit with different lead variants.'

www.medicalrepublic.com.au/fibromyalgia...
Fibromyalgia finally gets a genetic fingerprint - Medical Republic
A massive global study links the chronic pain condition to 26 genes associated with brain signalling, marking a turning point in understanding its biological roots.
www.medicalrepublic.com.au
November 16, 2025 at 5:07 PM
actionforme.bsky.social
(2/2) Sian, an Action for ME staff member who is also a member of the PPI steering group for DecodeME and PPI Coordinator for the PRIME project, presented as part of the 'Patient Advocacy Panel’ session.

🔗 Watch the recording of this presentation on YouTube: youtu.be/S3SScaC0L1o

#MECFS #pwME
November 14, 2025 at 3:16 PM
actionforme.bsky.social
(1/2) 🎥 Conference presentation now available on YouTube!

🧬 This week we shared our work on Patient and Public Involvement within DecodeME at The International Conference on Clinical and Scientific Advances on ME and long Covid, held in Porto, Portugal.
November 14, 2025 at 3:15 PM
jackamatica.bsky.social
Large-scale genome-wide studies changed the field.

DecodeME, with over 17,000 participants, found strong female predominance and subtypes linked to viral or non-viral onset.

It showed illness duration and age were tied to greater severity.
November 14, 2025 at 2:09 PM
mecfsskeptic.bsky.social
Interesting that this Canadian study found upregulated genes involved in neuronal differentiation and development.

DecodeME and the Snyder preprint also pointed in that direction (although using other genes and approaches).
mecfsskeptic.bsky.social ME/CFS Science @mecfsskeptic.bsky.social · 5d
5) The researchers also did RNA-sequencing to see which genes are upregulated.

In female patients, these were genes involved in neuronal differentiation and development such as ZNF469, BRINP2, and FEZF2.
November 12, 2025 at 10:22 AM
swastrosarah.bsky.social
Myhill did not vet for PEM though. This was a huge error of judgement, given CFS a la UK is psychiatric.
She also promoted an untested hypothesis in advocating for what is, frankly, a racist diet.
Similar issue for UK bio bank as controls for #DecodeME.
Most #pwME in the world are NOT Anglo Saxon.
November 10, 2025 at 9:19 PM
actionforme.bsky.social
Sian, an Action for ME staff member who is also a member of the PPI steering group for DecodeME and PPI Coordinator for the PRIME project, will be presenting about DecodeME PPI as part of the 'Patient Advocacy Panel’ session!
November 10, 2025 at 11:10 AM
valebodi.bsky.social
Research – Building on discoveries like DecodeME, a National ME/CFS Research Strategy is essential to guide investment and unlock diagnostic and treatment breakthroughs.
“There are three reasons why ME deserves a national [research] strategy: a high prevalence…, a huge and substantial health, social
November 9, 2025 at 11:02 PM
markkirby.bsky.social
Are you are aware of the Decode ME study in the UK. 16000 DNA samples from ME sufferers compared with control group showed 8 markers of genetic abnormality associated with imune system response. Proof of a genetic element to ME. Break through. More here:

institute-genetics-cancer.ed.ac.uk/decodeme
DecodeME : The world's largest ME/CFS study | Institute of Genetics and Cancer
DecodeME aimed to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS). The study will help us understand the disease and ultimately find t...
institute-genetics-cancer.ed.ac.uk
November 7, 2025 at 8:47 PM
tomkindlon.bsky.social
I believe this webpage of an active UK research team led by @cgatist.bsky.social has recently been updated

"Chris Ponting Research Group"

institute-genetics-cancer.ed.ac.uk/research/res...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Home Institute of Genetics and Cancer Research Research Groups A-Z Chris Ponting Research Group Chris Ponting Research Group ME/CFS Disease Mechanisms Professor Chris Ponting Chair of Medical Bioinformatics Contact details Email: Chris.Ponting@ed.ac.uk Research in a Nutshell Our research uses cutting-edge analytical approaches in genetics, genomics, transcriptomics, and cell biology to determine the causal mechanisms of myalgic encephalomyelitis (ME, sometimes known as chronic fatigue syndrome [CFS]). We work closely with colleagues, Sjoerd Beentjes and Ava Khamseh, and host Audrey Ryback’s ME/CFS research programme. In previous research, we estimated the lifetime prevalence of ME/CFS to be approximately 400,000 UK individuals. We also identified 116 molecular traits that differ significantly between cases and controls, for females and separately for males. The DecodeME project is a £3.2m NIHR and MRC-funded strategic grant run as a coproduction with people with lived experience of ME/CFS. With 18,000 DNA participants, this is the world’s largest genetic study into ME/CFS. An initial genome-wide association analysis (using matched UK Biobank individuals as controls) identified 8 genetic signals. The preprint describing these results has been highlighted by UK and international media.
November 5, 2025 at 11:58 PM
heikewigr.bsky.social
2/ "By examining the 3D architecture of DNA, the UEA and Oxford BioDynamics team uncovered hundreds of additional biological differences, including five of the eight genetic regions previously identified by DecodeME."
November 5, 2025 at 7:54 PM
heikewigr.bsky.social
1/"In the ME/CFS study, researchers found a distinctive genomic pattern present only in affected individuals and absent in healthy participants. This work looked beyond the linear DNA sequence explored in the large DecodeME study".
November 5, 2025 at 7:54 PM
hugle.uk
www.sciencedaily.com/releases/202... - here it says that mecfs is NOT a genetic disorder, but I thought that the DecodeME study (to which I gave my DNA) showed that it was. Are there any science explainers out there? What's the story?
Breakthrough blood test finally confirms Chronic Fatigue Syndrome
A team of scientists has developed a highly accurate blood test for Chronic Fatigue Syndrome. The test reads tiny DNA patterns that reveal the biological signature of the illness. For millions who’ve ...
www.sciencedaily.com
November 4, 2025 at 10:50 AM
tomkindlon.bsky.social
HealthRising interviews Steve Gardner from PrecisionLife @precisionlife.bsky.social

www.healthrising.org/blog/2025/10...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @cortjohnson.bsky.social
HealthRising interviews Steve Gardner from PrecisionLife The interview covers why and how the company got involved in ME/CFS research, their approach and goals and some details of partnerships and trials. Their analysis of the DecodeME data is also discussed with the expectation of a preprint with the results to be released in the coming weeks.
November 4, 2025 at 1:40 AM
redrocket.bsky.social
Better article : epigenetic markers of #Myalgic E

#CFSMe #DecodeMe #Spoonies #DisabilitySky #NEisvoid

"experts not involved ... 'test would need to be fully validated in better designed and independent studies before it could be considered for use in clinical practice.' "

Exactly what I said!
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
November 3, 2025 at 8:54 PM
tomkindlon.bsky.social
A poster on the Action for ME/DecodeME collaboration is one of the finalists for the VHS [Voluntary Health Scotland] Annual Poster Competition

vhscotland.org.uk/vhs-poster-c...

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @decodemestudy.bsky.social @cgatist.bsky.social @actionforme.bsky.social
Screenshot of photo: too long to summarise
October 31, 2025 at 3:07 PM
actionforme.bsky.social
More on DecodeME and our partnership with the University of Edinburgh 👇

www.actionforme.org.uk/research-cam...

#MyalgicE #MyalgicEncephalomyelitis #MEAwareness
Graphic with DecodeME and Action for ME logos, laptop illustration, and text: “Want to find out more? Read more about DecodeME and our partnership with the University of Edinburgh, on our website!”
October 30, 2025 at 3:35 PM
actionforme.bsky.social
We were delighted to share our poster on Public & Patient Involvement (PPI) in DecodeME at Voluntary Health Scotland’s Annual Conference

Avril, our Projects & Participation Senior Practitioner, highlighted the impact, successes & learnings from PPI 🔎

#pwME #MECFS
Poster with DNA graphic and colourful text circles at Voluntary Health Scotland conference. Caption: “As finalists, we presented on PPI in DecodeME at the Voluntary Health Scotland conference.” Graphic titled “The impact of PPI” showing benefits: improved accessibility, shaped communications, and informed questionnaires. Includes quote: “DecodeME would not have delivered its goals without PPI.” Graphic titled “Feedback from the DecodeME team” highlighting diverse PPI input, influence on expertise, and citizen science. Quote: “My role with DecodeME helped me return to work after being too unwell.” Graphic titled “Our key PPI takeaways” with points on embedding PPI in governance and equal decision-making. Quote: “Having PPI in leadership has been crucial to the study functioning.” Logos for DecodeME and Action for ME.
October 30, 2025 at 3:35 PM
wamesmecfs.bsky.social
Cort explores PrecisionLife's attempt to identify genetically based ME subsets, the mechanisms driving those subsets, biomarkers for those subsets, drugs that move those mechanisms, and test them. It is now examining DecodeME data to help with that.
tinyurl.com/yc68kv5x
PrecisionLife's Bold Attempt to Break the Code on and Beat ME/CFS and Long COVID - Health Rising
Geoff’s Narration The GIST   This is the next in a series of blogs exploring ongoing projects in ME/CFS, FM and long COVID. The first featured the RECOVER project’s next set of long COVID clinical tri...
tinyurl.com
October 30, 2025 at 10:08 AM
emergeaustralia.bsky.social
Prof Ponting: DeCodeME discovered 8 regions that predispose to ME/CFS. These regions are most active in the brain. This highlights that ME/CFS is at least in part a neurological disease. There is also overlap with fibromyalgia and long COVID. This means there are shared predisposing factors.
October 30, 2025 at 3:12 AM
emergeaustralia.bsky.social
Prof Ponting: Aim of the DecodeME study: 1)To identify the genetic variants that predispose ppl to ME/CFS and 2) To build a cohort of data to share where there is consent. This project is a co-production with the ME/CFS community ensuring lived experience is central to the project.
October 30, 2025 at 3:08 AM
emergeaustralia.bsky.social
The next speaker is Professor Chris Ponting. Professor Ponting is Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Cancer. He is Chief Investigator of the UK DecodeME Edinburgh study
Professor Chris Ponting. Chris is wearing a grey jumper with a blue lanyard around his neck and glasses. He is smiling at the camera.
October 30, 2025 at 3:06 AM
emergeaustralia.bsky.social
The next speaker is Professor Chris Ponting. Professor Ponting is Chair of Medical Bioinformatics and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Cancer. He is Chief Investigator of the UK DecodeME Edinburgh study
Professor Chris Ponting. Chris is wearing a grey jumper with a blue lanyard around his neck and glasses. He is smiling at the camera.
October 30, 2025 at 3:05 AM
emergeaustralia.bsky.social
A/Prof Bernard Shiu: Research like the UK genetic DecodeME study, and other research looking at immune system, autonomic nervous system and cellular energy pathways show that #mecfs and #longCOVID are not mysterious diseases. They are measurable biological conditions.
October 30, 2025 at 3:01 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