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...
Two distinct peaks in age of ME/CFS onset) "Our findings suggest that incidence of ME/CFS peaks in adolescence and 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" (The first peak appeared in adolescence, with an average age of onset of 16 years. (-Fhe second peak was middle age, with onset age averaging 36.6 years. Note: Graph is is0 for illustrative purposes only Age of onset INFORM. INFLUENCE. INVEST. SCO36942 RESoArH 80 McGrath S et al., Oxford Open Immunology (2026)
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
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...
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
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
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.
7/7 Thanks also to @actionforme.bsky.social for the funding that enabled me to do this work. Link to the paper: academic.oup.com/ooim/advance...
6/7 It would be useful for future ME studies to consider onset age for subgrouping patients. This may potentially yield improved power to identify differences in this heterogeneous disease. Thanks to all the other coauthors @charliehillier.bsky.social, Trude Schei, Arild Angelsen, Joshua Dibble.
5/7 The implications of this result are not clear yet. Two onset age peaks is an unusual feature for a disease (most only have one) and might suggest different causes of early and late onset ME, or biological processes changing with age that make it more likely to develop ME at these life stages.
4/7 An important limitation is that we analysed survey responses, so we cannot rule out that biases could affect our results. We also only described associations, not causal relationships. But together with the original study from Norway, we think the evidence for two age peaks in ME is now strong.
Percentage of participants in EMEA with varying levels of severity. The second graph shows the relative proportions of participants with different levels of severity, in the early and late onset, and showing an enrichment for severe cases for those with early onset ME.
3/7 When we compared the features of early and late onset ME. We found that those with early onset ME were more likely to report infection as a trigger, particularly GF/IM, and were more likely to be more severely affected. Those with relatives with ME were also more likely to have early-onset ME.
Onset age distributions for each of the individual European countries with two normal distributions fitted to the data to estimate the mean and standard deviations of the two onset peaks.
2/7 We found evidence for a first peak in adolescence and a second peak in early middle age. The average ages for the early and late onset peaks were strikingly similar across countries. Countries did vary in terms of how big the early onset peak was relative to the late one.
Three onset age distributions for ME/CFS, one for Norway, one for the combined 9 other countries, and one for a DecodeME subcohort, with fitted splines.
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...
I'm very proud to share this paper, the first from my fellowship. We took a lot of care to perform this replication as rigorously as possible and got the most definitive answer we could. Publishing null results can be challenging but is an essential step in establishing firm evidence.
2/3 Although our findings challenge previous observations of ME serum effects, this does not mean that there are no ME-disease factors. Future studies should use different approaches to look for them.
Thanks to @actionforme.bsky.social for funding this work and to all of our study participants!
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...
⌛ 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!
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
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!
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.
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.
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
🎉 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
🧵
Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.
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...