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.
04.02.2026 10:21 β π 5 π 1 π¬ 0 π 0
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!
04.02.2026 10:21 β π 3 π 0 π¬ 1 π 0
β 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.
π Take part today: www.actionforme.org.uk/research-cam...
26.01.2026 15:06 β π 7 π 4 π¬ 0 π 1
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!
22.01.2026 12:33 β π 15 π 12 π¬ 0 π 0
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.
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 π
edin.ac/3MDRZle
04.12.2025 13:22 β π 3 π 4 π¬ 0 π 0
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.
13.10.2025 10:30 β π 19 π 10 π¬ 2 π 0
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.
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
12.10.2025 12:31 β π 12 π 7 π¬ 0 π 0
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.
π We are delighted to launch this yearβs 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
π§΅
13.10.2025 13:53 β π 5 π 7 π¬ 2 π 0
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...
08.10.2025 06:39 β π 67 π 26 π¬ 5 π 6
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...
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...
01.09.2025 08:57 β π 20 π 19 π¬ 0 π 0
The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association
The ME Association are pleased to announce that we have [β¦]
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
29.08.2025 10:11 β π 43 π 16 π¬ 2 π 2
New course βEMBO Causality in Biomedicineβ: 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!
12.08.2025 14:03 β π 10 π 7 π¬ 0 π 0
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"
"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.β - 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
12.08.2025 10:11 β π 69 π 42 π¬ 0 π 0
DecodeME logo
Home > X marks the spot where ME/CFS biology can be discovered
X marks the spot where ME/CFS biology can be discovered
06 August 2025
Scientists, people with ME/CFS, and their charities came together to create DecodeME, the world's biggest ME/CFS study β and its results are striking. 18,000 people with ME/CFS gave their DNA, enabling DecodeME to reveal eightgenetic signals for the illness. These signals indicate that immune and neurological processes play a significant role in ME/CFS.
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
07.08.2025 00:44 β π 22 π 10 π¬ 1 π 0
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 itβs the real deal.
Here are a couple of reasons why it stands out. π§΅
10.08.2025 11:26 β π 71 π 27 π¬ 4 π 2
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
DecodeME results are out! So inspired by my incredible colleagues at UoE who have carried out this research to the highest standard. I hope these results will bring about a paradigm shift in ME/CFS research and attract more interest and investment to the field. shorturl.at/VwN3s #DecodeME
06.08.2025 23:01 β π 45 π 14 π¬ 1 π 0
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says βWe have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.β 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
06.08.2025 18:24 β π 253 π 147 π¬ 17 π 37
Dark blue background with image of DNA helix. At the top of the DecodeME βthe resultsβ logo. Two spotlights shine on a speech bubble that says βInitial DNA resultsβ. To the right of this is an image of a research paper. At the bottom of the graphic it says βWednesday 7pm BSTβ.
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.
04.08.2025 17:23 β π 69 π 33 π¬ 2 π 5
Research Update from Dr Audrey Ryback - Findings and Pre-Print Available - Action for ME
An update from Dr Audrey Ryback's research, testing the effect of serum from people with ME on muscle cell mitochondria, and findings.
@aryback.bsky.social is a Research Fellow at the Uni of Edinburgh, holds the first Clare Francis Postdoctoral Fellowship awarded by Action for ME.
Audreyβs research will play an important part in understanding ME/CFS.
Read the pre-print here π
www.actionforme.org.uk/research-upd...
#MECFS #pwME
16.06.2025 13:34 β π 11 π 5 π¬ 0 π 0
π’ Now published:
www.embopress.org/doi/full/10.....
Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences.
bsky.app/profile/cgat...
20.06.2025 05:44 β π 142 π 71 π¬ 15 π 6
2/2 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!
09.06.2025 12:13 β π 10 π 0 π¬ 2 π 1
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis 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 has been proposed to cause phenotypic changes in these cells in vitro when compared to sera from healthy controls. ME serum factors causing these changes could inform the development of diagnostic tests. In this study, we performed a large-scale, pre-registered replication of an experiment from Fluge et al (2016) that reported an increase in maximal respiratory capacity in healthy myoblasts after treatment with serum from people with ME compared to serum from healthy controls. We replicated the original experiment with a larger sample size, using sera from 67 people with ME and 53 controls to treat healthy cultured myoblasts, and generated results from over 1,700 mitochondrial stress tests performed with a Seahorse Bioanalyser. We observed no significant differences between treatment with ME or healthy control sera for our primary outcome of interest, oxygen consumption rate at maximal respiratory capacity. Results from our study provide strong evidence against the hypothesis that ME blood factors differentially affect healthy myoblast mitochondrial phenotypes in vitro. ### Competing Interest Statement The authors have declared no competing interest. Action for ME, https://ror.org/0569v7v35, Clare Francis Research Fellowship
1/2 New pre-print: 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/10.1101/2025...
09.06.2025 12:13 β π 17 π 5 π¬ 2 π 0
Unequal access to diagnosis of myalgic encephalomyelitis in England
NEW: There are 400,000 people diagnosed with ME/CFS in the UK, at least there would be if access to diagnosis was equal.
ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases
rdcu.be/eiEeu
22.04.2025 07:01 β π 59 π 31 π¬ 1 π 2
Thanks Daniel, hope to meet you sometime soon!
12.03.2025 22:19 β π 2 π 0 π¬ 0 π 0
Frontiers | Deep sequencing of BCR heavy chain repertoires in myalgic encephalomyelitis/chronic fatigue syndrome
Pleased to share this research from my PhD in @graemecowan.bsky.social's lab! We replicated existing evidence of moderately increased IGHV3-30 usage in B cells of patients with mild/moderate, but not severe ME. www.frontiersin.org/journals/imm...
17.02.2025 11:01 β π 24 π 11 π¬ 2 π 2
Liberal Democrat MP for North East Fife πΆ Chief Whip
Shinty player πΆ
Wendy.Chamberlain.mp@parliament.uk
she/her
Epigenetic Inheritance, Neuroscience & anything biology-related
https://www.odedrechavilab.com/
q.e.d: https://www.qedscience.com
Organizer of βThe Woodstock of Biologyβ
TED: https://shorturl.at/myFTY
Huberman Lab Podcast: https://youtu.be/CDUetQMKM6g
Chancellorβs Fellow (Asst. Prof.) in Mathematics at #UoEdinburgh | Causal Inference | Semi-parametric statistics | Biomedicine
Reader (Associate Professor) in Biomedical AI at University of Edinburgh |Quantitative Biomedicine #causalinference #ML #AI - views are my own
Researching βthe greatest medical scandal of the 21st centuryβ. Infection-Associated Chronic Illness, activism, stigma, medical humanities. Postdoctoral fellow in Sociology.
Our mission is to improve the lives of people living with genetic disease and cancer through research.
PhD Student, University of Edinburgh
Researching the cell biology of ME/CFS since 2016, now also Long COVID and PD. Papers: https://scholars.latrobe.edu.au/d2missailidi/publications
Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak.
I care.
βΆπ, (FR/DE/EN, but posts in english)
Clinging onto the ledge above the abyss.
Founder & CBIO @precisionlife.bsky.social, NED @dhcwales.bsky.social & STFC Innovations Limited. Former Juror for Cartier Women's Initiative.
Interests #bio #diversity #ai #techbio #climate #precisionmedicine #digitalhealth personal account
Immunologist at University of Edinburgh working in B and T cells in infection (malaria) and autoimmunity (rheumatoid arthritis). I use NGS, computational biology, single cell approaches and Adaptive Immune Receptor Repertoire seqπ¨π»βπ»π§¬π¦ π§«
European Research Council, set up by the EU, funds top researchers of any nationality, helping them pursue great ideas at the frontiers of knowledge. #HorizonEU
United in hope, we fund and support groundbreaking research to uncover answers and bring relief to those battling #MECFS and related illnesses. Together, we can change lives. π
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.
With ME/CFS 36 years, severe ME 31 years.
@IrishMECFSAssoc trustee 28 years
26 publications in peer-reviewed journals
Social media: https://me-pedia.org/wiki/Tom_Kindlon
In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic.
https://mecfsscience.org/
News, interesting information and commentary on ME/CFS.
ME/CFS ist eine schwere kΓΆrperliche Erkrankung, die bisher kaum erforscht ist. Wir setzen uns fΓΌr die Interessen der Erkrankten und mehr Forschung ein.
mecfs.de
Professor of Immunology, Imperial College London. Editor of OUP Oxford Open Immunology. Co-author - Penguin Long Covid Handbook. Discusses: Covid-19, Long Covid, T cells, immunogenetics and HLA, respiratory infection, science policy, arboviruses, C19th lit