Thanks to @biainfection.bsky.social for the kind invitation to present the initial results of the @decodemestudy.bsky.social GWAS. In a quiz, attendees correctly identified PEM as the defining feature of #ME, ☑️ its strong female bias ☑️ and its much higher prevalence cf MS. ☑️ 💪

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.

2.30pm today, for everyone who remembers David Black and his incisive writing about #ME, and later #LongCovid, from a Scots law perspective youtube.com/live/5PlISD2...

This was such an important paper, and I was dismayed when it did not have the impact that I hoped it would. But unfortunately, that is the way it usually goes for post-publication "debate", when the vested interests are in bed with the journals. #PACEtrial

This week we were informed by DHSC, alongside other organisations, that DHSC and NHS England have delayed discussions on commissioning a specialised service for very severe ME until April 2027. This means yet another year without NHS care for people with very severe ME. (1/3)

Like many in the ME community I’m deeply disturbed at the news that DHSC is pausing work on a specialist service for very severe ME until April 2027. It’s been good then to be able to talk with minister Sharon Hodgson, and Carolyn Leary from Forward ME. The very understandable concerns are heard.

📖 ONE 2 READ: Excellent article on the pioneering work of @cvcev.bsky.social 👉 How they changed the culture, practice & output of the #covidinquiry They modelled masking & didn't wait for permission Outstanding advocacy 💙

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.

1/3 NEW MOD Updated Guidance Published! The JSP 950 Leaflet 6-7-7 V3.2 Effective from 10 Feb 2026 has updated the guidance from previously stating CBT and GET have 'definite benefit' to now stating the 'most up-to-date NICE guidance' should be followed.

Great to see this new sympathetic and well-researched in-depth article from @quillette.bsky.social 👍👏 quillette.com/2026/02/22/t... Note: only a portion of it is available initially; one needs to subscribe to a free email list to see the full piece #MEcfs #CFS #PwME #ChronicFatigueSyndrome 1/

About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n

Your wish is our command! Next year, the PRIME network intends to organise a (hybrid) Symposium exactly on the topic of biomarkers and diagnostic tests. Who should we invite? #MEcfs bionow.co.uk/news/prime-b...

Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.

Thank you Emily for being open to dialogue. Unfortunately this is a long standing practice of Wessely's. He has used it to successfully modify the historical record about himself. We hope as a historian and anthropologist you can understand the impact this has to the narrative, esp for patients.

BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid. youtu.be/eu8Lj_R-OtQ?...

December 15th. Thank you for being #ThereForME, Nicky Proctor! Nicky is an advocate for people with ME, who volunteers with various ME organisations - including #ThereForMe. Nominated by Odette & the York ME Community slow-lane.bsky.social#ThereForME#ThereForMe✨

For information for all Visible users, the clinical trial ‚Balance Acceptance and Commitment Therapy for Long Covid‘ is run by Trudie Chalder. So, is the question now: is #LongCovid a state of mind??

. @swastrosarah.bsky.social Wondered if you had seen this? Ella Copley only 20 Just grim

Awesome to see @rorpreston.bsky.social and team keep adding more graphs and data to their brilliant website at crunchme.org! They've added some very good graphs from last year's EMEA Patient Survey of over 11k #pwME across the world

Today's #ThereForME blog shares our takeaways from last week's Westminster Hall debate, tabled by @tessamunt.bsky.social 👇

Today’s Westminster Hall debate on government support for people with #MECFS is now on YouTube. Led by Tessa Munt MP (Wells and Mendip Hills, Liberal Democrat), and lasts around an hour. youtu.be/wZFEUnjWgOA?...

Sir Charlie Mayfield, author of the Keep Britain Working Review, endorses the BioPsychoSocial model (mispronounces it) and also says he thinks we should mainly focus on the Psycho and Social parts…

1️⃣ 🧵 NEW: The government’s Keep Britain Working report claims to tackle the UK’s crisis of ill health & economic inactivity. But it never mentions Long Covid. Not once. Not the pandemic either. That’s not a small oversight — it’s a fundamental flaw. Let’s unpack why 👇 🔗 www.gov.uk/government/p...

Ep26 | Long COVID Clinic Fireside Chat with @binitakane.bsky.social & @helenoakleigh.bsky.social Hydration, Appetite & Blood Sugar in POTS 🗓️ Wed 5 Nov 18:00 GMT | 📺 YouTube Dr Binita Kane & @angryhacademic.bsky.social unpack low blood volume, thirst, “low blood sugar” sensations & hunger in POTS.

There is no need for a moral panic about the UK's welfare system. Far from perfect but recent discourse is nuts Spending is controlled, not spiralling Worklessness is near record lows My column www.ft.com/content/ee67...

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...

Tomorrow, Tue 7 Oct, the Welsh Senedd Business Committee will consider allocating 15 Oct to a Severe/Very Severe ME debate. It has a good chance of being selected. #pwME in Wales please help, email your MS and ask them to back MS Adam Price’s Motion. Find your 1/2 record.senedd.wales/Motion/8884

I wonder how long before the subs stop using "chronic fatigue syndrome". It's a lot of wasted line space compared with ME. #ME #Editors #Journalism

Recording of the "On the Violence of Psychologisation of Postviral Illness: A Habermasian Solution?" talk - w. myself, @ffhambu.bsky.social, Sonja Hannibal & @privilegienschreck.bsky.social is now available online (with subs!) 😍 #LongCovid #MECFS #Injustice t.co/jQYqzfIQNe

@drrageshri.bsky.social youtu.be/7jENpyRnYbE?...

Visited for 3 minutes today. A NHS London hospital doing everything it can. The contrast with how it was before #MaeveInquest made me weep. Staff are protecting Savannah from visitors, without intruding on her autonomy. Very high bar. Strain could learn much from them. @ashleydaltonmp.bsky.social

The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group The process so far has been extremely progressive I am hugely optimistic that a world-leading guideline will be produced #pwME #MECFS

🧵 Savannah update - please share widely. Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME. All her energy is being spent on calling for help. There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join 1/2

We were really encouraged by the support we had from the many Senedd Members (MSs) who visited the Severe ME Difrifol Cymru stall at Y Farchnad (The Marketplace) in @senedd.cymru on 15th July… 1/4

🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂 "Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness" justice4me.uk

'standard operating procedures'. ME demands staff ignore SOPs. The on practical help I am aware of anywhere in the world is in the link pinned to my profile. In England pwME under NHS care are given PN and TPN once it is established they are starving, but only in hospitals. This destroys any chance

🧵For decades, parents of children with #MECFS have faced false accusations of Fabricated or Induced Illness It’s like being committed to a psychiatric hospital when you’re not mad… easy to throw around, very difficult to disprove — Clip - Dr Nigel Speight, Panorama (1999)

In our case Maeve was diagnosed at 17. It took 4 years to obtain. There were no Safeguarding referrals because she didn't miss any schooling. She loved to learn and was a joy to teach. She was known to our specialist NHS CFS service for 7 years. They had nothing to offer but agreed to keep her 1/2

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4

Emily said the online version will be given more space. Huge thanks to her & the Sunday Times (@thetimes.com) for giving this aspect the exposure Devon County Council so successfully covered up. Their right of reply says it all. Maeve was taking them to judicial review. Died trying. #MaeveInquest

🚨!!PLS SHARE & TAG #pwME !!🚨 @natashadevon.bsky.social TONIGHT on @LBC 7-8pm Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?' Tel/WhatsApp 0345 606 0973 SMS 84850 #MECFS #MyalgicEncephalomyelitis #SevereMEDay #LongCovid

Some of the best metaphors come from this team. Buried treasure is what #ME represents for any genuinely interested biomedic. It's wow territory in so very many ways. All that is needed is the courage to invest in exploration of the map @ashleydaltonmp.bsky.social

Huge congrats to Chris Ponting and the whole Decode ME team on their preprint on #genetics of people with #MECFS! Pre-print plus li'l video before we get into a deeper dive. Vid: www.youtube.com/watch?v=0S5u... Preprint: www.pure.ed.ac.uk/ws/portalfil... 🧪 🧵

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...

The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research. A huge thanks to all our participants for giving their time, energy & DNA to the project. Learn more about our findings: shorturl.at/XOVJ1

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

Exciting! DecodeME: "the initial DNA results from the DecodeME study will be available in the next few days" www.decodeme.org.uk #MEcfs #PwME #CFS