Three weeks ago UK Biobank indicated "that re-opening access will start before October." This did not happen. We will get back to you when/if we're told more. @decodemestudy.bsky.social #MEcfs #pwME #UKBiobank @ukbiobank.ac.uk

(2/3) I had to glimpse the cards to organise them. Then one day I did the unthinkable. I took a printout of the Wikipedia article on #MECFS and read a whole sentence. Later a whole paragraph, then another! My eyes hurt and my brain crashed, but after a week I read it all and started on DecodeME.

I want to try something again at #ASHG26: I'll block off some time on Weds/Th/Friday afternoons to meet with trainees who would be interested to chat on any topic.

I have done this the last 2 years and it was great to meet a whole bunch of new people, from many countries, at all career stages!

@davetuller1.bsky.social, a great champion of patients, interviewed me about the massive, ongoing scandal of the neglect, abuse and mistreatment of people with ME/CFS www.youtube.com/watch?v=Maae...

MRC success rates drop sharply after grants overhaul.

Warnings of “catastrophic” impact on medical researchers as some rates fall below 5 per cent.

www.researchprofessionalnews.com/rr-news-uk-r...

Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential.
#MEcfs #PRIME26 #LongCovid

Dr Katharine Cheston on the @actionforme.bsky.social 2025 Big Survey Results. 5,424 people, 85.1% female; 18.4% v/severe. She is "shocked and appalled" by the data: by people's experience living with #MEcfs. Headline results will be released later in 2026.
#pwME #PRIME26

Exciting to see the official launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium at this two-day symposium. At IGC, important research into ME/CFS is being conducted by @cgatist.bsky.social, @aryback.bsky.social
and Joshua Dibble who are all involved in this meeting.

Two signals in TMEM106B & VWDE locus. Associations affect gene regulation not protein sequence. Genome wide: the pituitary tissue is the most enriched in gene expression.
Is #MEcfs genetics similar to other diseases? Yes! Long Covid and fibromyalgia have strong genetic correlations w MEcfs.

New results. Eleven associations! Focuses on EXD3 Val540Met. (NB: unpublished results that need replication.)
Genetic overlap with neuronal, immune, endocrine and sleep traits.
EXD3 missense variant in exonuclease catalytic cleft. Immune function?
#Prime26

Now launches the new consortium. Its point is to identify #MEcfs pathomechanisms, susceptibility and recovery. 60,542 cases and 2.8 million controls. Well powered! Case definition: diverse info, not all optimal.

Now up: Hannah Ollila (Helsinki) launching the new international Genetics Epidemiology of ME/CFS (GEM) consortium. Contrasting the genetics & infection trigger of narcolepsy vs #MEcfs. Narcolepsy: HLA-DQB1*06:02 carriers & autoimmunity. Talking about the importance of whole genome sequencing.

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

I just gave a talk on interdisciplinary yesterday that features a call for interdisciplinary people and not just diverse teams of disciplinary types. Today I read this essay with delight. Viva antedisciplinarity. journals.plos.org/ploscompbiol...

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2
www.theguardian.com/commentisfre...

For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.

Nearly 2 years on, this has now been read 60,000+ times. Sad to say: it's as relevant today as it was then & as it was decades before.
Thank you @simonmcg.bsky.social for your help with this.

Some of this we can resolve:
Human SNPs (on the array) are skewed towards being rare; few SNPs are correlated cos we didn’t use imputations; null/realistic simulations show TarGene’s good performance academic.oup.com/biostatistic...
We think we know why most hits are protective & will update
Thanks!