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

Correct. It would save money. As the inquest heard NHS England refused to do so, despite being asked on 3 separate occasions because other people were at risk like Maeve. I have it all in disclosure. DHSC is aware. @ashleydaltonmp.bsky.social

Update from Isla’s mother @swiftsandswallows.bsky.social , “We are very grateful for the overwhelming support from the ME community, it honestly means such a lot. For now though we need time to digest what's happened, to regroup and to catch up on sleep.”

It will fail but criminal investigations are horrendous in a situation like this. A 15 year old (who saw her elder sister die having been made more unwell by the people she will rely on as the disease progresses) forcibly removed from hime. No wonder people suicide @alastaircampbell2.bsky.social

Coming soon

Please boost—this is terrifying. For those who don’t know, Sarah lost her daughter to very severe ME after the disease was disbelieved/mistreated by doctors. Isla died in similar circumstances & now her mom has been unjustly arrested & her sister who also has ME has been taken & is in serious danger

This is horrific. Isla's Mum and I have been following each other for a long time. The family has suffered terribly: Severe mistreatment and neglect, and Isla's death last year. Separating Isla's younger sister from her family's care further jeopardises her health.

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS

📢 Our Campaign Guide is out! It deals with common media traps that we need to know how to deal with 🗣️ Part One covers the ‘Bait & Switch' tactic: ‘Its not ALL in you Head But…’ Easy-to-read download & audio included 💌 Help us shift the paradigm and share away!