Audrey Ryback
@aryback.bsky.social
ME researcher at the University of Edinburgh.
Register for the PRIME International Symposium to explore emerging ME/CFS research with researchers, clinicians, charities and people with lived experience. 🗓️ 28 Sept 9am-29 Sept 2pm Find out more and register here 👇 www.actionforme.org.uk/register-for...
👉 Read more about the announcement on our website www.actionforme.org.uk/major-fundin...
Major funding secured for Sequence ME & Long Covid, a DecodeMe project
We are thrilled to announce that our landmark research study, Sequence ME & Long Covid, has received major funding (£4.75m) from the UK government, signalling a transformative...
actionforme.org.uk
It was a delight speaking to @davetuller1.bsky.social about our recent paper lead by @simonmcg.bsky.social with @charliehillier.bsky.social, @tschei.bsky.social, Joshua Dibble and Arild Angelsen. We discuss why this is solid evidence for two age peaks in ME/CFS onset and the biological implications.
Simon McGrath@simonmcg.bsky.social · 3mo agoA great interview with Dr Audrey Ryback about the recent finding of two consistent age peaks in many European countries for the onset of ME/CFS. Follow-up work using the @actionforme.bsky.social Big Survey data hopes to give insight into early vs late onset differences @aryback.bsky.social.
Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS. mecfsresearchreview.me/2026/04/15/m...
ME/CFS onset had two peaks, which may be a clue to causes
A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, arou…
mecfsresearchreview.me
ME Research UK: Researchers have looked at survey data from over 9,000 people across 10 European countries and observed two peaks in ME/CFS onset. Read more: tinyurl.com/3utbebt5 #MEcfs #PwME #CFS
My good friend Tom Micklem who I first met back in university is running the London Marathon to raise money for Action for ME! @actionforme.bsky.social You can read about it and donate here, good luck Tom!: 2026tcslondonmarathon.enthuse.com/pf/tom-micklem
Tom is running the London Marathon
Hello everyone Should all go to plan, I will be running the London marathon in April and I am taking the opportunity to raise some money for Action for M.E. Myalgic encephalomyelitis (M.E.), or chroni
2026tcslondonmarathon.enthuse.com
This large-scale study analysed data from more than 9,000 people with ME/CFS, helping to build a clearer picture of the condition’s onset, potential triggers, and links to illness severity. Find out more here: www.actionforme.org.uk/me-onset-pat...
New study finds age peaks in ME onset
New research funded by Action for ME explores when ME develops, identifying two peak onset periods and links to triggers and severity.
actionforme.org.uk
Just published in JOSS: 'TarGene: A Nextflow pipeline for the estimation of genetic effects on human traits via semi-parametric methods.' https://doi.org/10.21105/joss.09603
Did you know there is strong evidence that people are most likely to develop ME/CFS at two points in life - at an average of age of 16 or 37? Read more about this new study led by @aryback.bsky.social 👉 edin.ac/4v3uIv0
Incidence of ME peaks in adolescence or early middle age | Institute of Genetics and Cancer | Institute of Genetics and Cancer
Researchers have found strong evidence that people are most likely to develop ME/CFS at two points in life, in a study that could help uncover causes of the disease and point to ways to prevent it.
edin.ac
1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties. The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease. A brief summary...
Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes. academic.oup.com/ooim/advance... 1/ team credits to follow
Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease
Abstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge
academic.oup.com
Read our paper with @simonmcg.bsky.social @aryback.bsky.social here! We report that ME/CFS has a bimodal age onset pattern with peaks in adolescence and early middle age. It is unusual for a disease to have more than one onset peak, a feature that may provide a clue into the causes of the illness.
Tom Kindlon@tomkindlon.bsky.social · 5mo agoIncidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease by @simonmcg.bsky.social et al academic.oup.com/ooim/advance... "early onset peak with a mean of 16.0 years old...& a late onset peak at 36.6 years old" #MEcfs #PwME
![Abstract
Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have suggested that ME/CFS incidence across age groups is bimodal–a characteristic that could provide insight into the aetiology of the disease. Here, we analysed survey data from over 9,000 respondents with ME/CFS from 10 European countries, and observe an early onset peak with a mean of 16.0 years old (standard deviation [sd]: 4.3) and a late onset peak at 36.6 years old (sd: 10.5). Statistical support for multimodal onset age was evident in 7 of the 10 countries examined. Infection as a trigger for ME/CFS is 10 percentage points higher among early compared to late onset disease (P = 2.1 × 10−13). Early onset ME/CFS was associated with greater odds of being severely or very severely affected (OR = 2.15, 95% CI [1.84—2.51], p < 2 × 10−16). Those with first degree relatives with ME/CFS had greater odds of early than late onset ME/CFS (OR = 1.43, 95% CI [1.25—1.63], P = 4.4 × 10−07). We further validated our findings in a UK dataset where we replicated bimodal onset age and observed significantly greater odds of glandular fever/infectious mononucleosis as a trigger in early onset cases (OR = 2.32, 95% CI [1.99—2.71], P = 2.4 × 10−24). Our findings suggest that incidence of ME/CFS peaks in adolescence and in early middle-age and that early onset ME/CFS is more common in those with affected relatives, more often triggered by infection, and associated with more severe disease.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreidgsfrupzytqd2d2yojrc5vdadnewq4q62vzkz5tdttnolxf22qeu)
1/7 Excited to share our new paper co-produced with @simonmcg.bsky.social. We found that previous reports of ME having two age peaks in Norway replicates in two different datasets and across 7/10 European countries we examined, suggesting this is a generalisable- and distinctive- feature of ME.
PhD project to identify ME/CFS diagnostic markers @edinburgh-uni.bsky.social Interdisciplinary #MEcfs science involving #ML #AI Fully funded if eligible for home fees Contact us: @aryback.bsky.social @avakhamseh.bsky.social @sjoerdvbeentjes.bsky.social www.findaphd.com/phds/project...
Precision medicine biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) using multi-modal AI/ML at University of Edinburgh on FindAPhD.com
PhD Project - Precision medicine biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) using multi-modal AI/ML at University of Edinburgh, listed on FindAPhD.com
findaphd.com
1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome is a disease of uncertain aetiology that affects up to 400,000 individuals in the UK. Exposure of cultured cells to the sera of people with ME...
doi.org
⌛ The Big Survey closes tomorrow! Your responses directly shape our work and help us to illustrate the impact of ME. If you're thinking about taking part, please do. 🔗 Take part today: www.actionforme.org.uk/research-cam...
Calling pwME in the UK- please fill out this survey if you haven't yet! I'll be using data from this survey to better understand at what ages people develop ME and from what types of triggers. Thanks to everyone who has taken part so far!
Action for ME@actionforme.bsky.social · 7mo ago🚨 One week left to contribute to ME research and fill in our 2025/26 Big Survey! If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏 🔗 Take part, and find out more: www.actionforme.org.uk/research-cam... Thank you!
Find a great project with the @uoe-eid.bsky.social Future Medicine PhD fellowships 2026, including with #IGC's @cgatist.bsky.social, @aryback.bsky.social, Sara Brown and Liz Patton, and IGC affiliates Kelly Blacklock, @avakhamseh.bsky.social and @sjoerdvbeentjes.bsky.social 👇 edin.ac/3MDRZle
Future Medicine PhD fellowships 2026 | Edinburgh Infectious Diseases | Edinburgh Infectious Diseases
New PhD opportunity to explore the role of infectious agents in chronic disease. 4 fully-funded PhD places are available for UK/home fee students. Apply by 16 January 2026 for entry in October 2026.
edin.ac
Want to join our amazing team for a PhD in ME/CFS research as part of a funded Future Medicine PhD Fellowship? See: www.findaphd.com/phds/project... We offer: Exciting and rigorous science, PPI, truly interdisciplinary and fantastic research culture! Please contact us to discuss before applying!
Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh on FindAPhD.com
PhD Project - Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh, listed on FindAPhD.com
findaphd.com
Interested in ME/CFS research? Want to do a PhD with @aryback.bsky.social, @avakhamseh.bsky.social, @sjoerdvbeentjes.bsky.social & @cgatist.bsky.social? Then apply for a *funded* Future Medicine PhD Fellowship. See: www.findaphd.com/phds/project... Please contact us to discuss before applying.
Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh on FindAPhD.com
PhD Project - Personalised blood-based biomarkers for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) symptom severity at University of Edinburgh, listed on FindAPhD.com
findaphd.com
The Big Survey is now live! It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
Action for ME@actionforme.bsky.social · 10mo agoOur 2025 Big Survey is now open! 🎉 For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/ Thank you for supporting our research💙 🤝in collaboration with @durhamimh.bsky.social @kacheston.bsky.social
UK Action for ME Big Survey 2025 The 5 yearly survey of people in the UK with ME/CFS will open on Monday 13th October. It has been developed by AfME in collaboration with @kacheston.bsky.social Dr Katherine Cheston at Durham University. www.actionforme.org.uk/research-cam... #MEcfs #PwME #CFS
2025 Big Survey
Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
actionforme.org.uk
🎉 We are delighted to launch this year’s Big Survey in collaboration with @actionforme.bsky.social! If you are in the UK living with ME or Long Covid with ME symptoms, we want to hear from you! tinyurl.com/2s4dbrkx 🧵
2025 Big Survey
Find out how you can contribute to our 2025 Big Survey - a vital research project aiming to illustrate the impact of ME and long Covid.
tinyurl.com
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here. www.theguardian.com/society/2025...
Seeking a Project Manager for the PRIME project: "Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs elxw.fa.em3.oraclecloud.com/hcmUI/Candid...
PRIME Project Manager
The PRIME project is looking for an experienced and dedicated project manager. This role will be crucial to the successful delivery of PRIME, with the post holder responsible for the strategic executi...
elxw.fa.em3.oraclecloud.com
The ME Association are pleased to announce that we have awarded Decode ME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study. Find out more: https://meassociation.org.uk/ir3e #MECFS #pwME #SevereME #MyalgicE #DecodeME #HowesGoudsmitAward
The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association
The ME Association are pleased to announce that we have […]
meassociation.org.uk
New course “EMBO Causality in Biomedicine”: We have organised the first EMBO course in *causal* stats/ML methods for quantitative biomedicine. @sjoerdvbeentjes.bsky.social @nimahejazi.org @pablormier.bsky.social @DariaSokolova @CarolineUhler Very much looking forward to teaching and discussing!
EMBL-EBI Training@training.ebi.embl.org · 12mo agoNew course announced! We're thrilled to be hosting the @embo.org Practical Course 'Causality in biomedicine: going beyond associations' from 4 – 9 October 2026. Register your interest and be the first to hear when the course opens for applications: www.ebi.ac.uk/training/eve...
"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
New blog post from DecodeME team explaining new findings and discussing them in a bit more detail: "X marks the spot where ME/CFS biology can be discovered" www.decodeme.org.uk/x-marks-the-... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1) Saw some skepticism about DecodeME, asking if it is overhyped. As an account that focuses on critically analyzing research (our name was 'ME/CFS Skeptic' for a reason!), we think it’s the real deal. Here are a couple of reasons why it stands out. 🧵
