iiinova — where your digital self keeps evolving

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Adam @abrokenbattery.bsky.social · 26/09/2026

Full interview (9 mins): youtu.be/H2rRf_f2hJs George’s recent article www.theguardian.com/commentisfre...

youtu.be

LBC | Natasha Devon interview with George Monbiot

YouTube video by Broken Battery

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

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...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Alem Matthees @alemmatthees.bsky.social · 21/09/2026

(1/3) Whitney Dafoe's #MECFS severity scale as published by Jahanbani et al. (2024), an article inspired by Dafoe's insights into extreme ME/CFS. Creative Commons Attribution License (CC-BY). pmc.ncbi.nlm.nih.gov/articles/PMC...

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Chris Ponting @cgatist.bsky.social · 11/08/2026

What is the evidence that psychosocial factors are direct aetiological factors in chronic diseases? This question, asked by George Davey Smith in 2005, and a follow-up comment from Simon Wessely, snagged my attention. Blog via @simonmcg.bsky.social's site. mecfsresearchreview.me/2026/08/11/o...

mecfsresearchreview.me

On BPS & disease causation: George Davey Smith’s cautionary tale

by Professor Chris Ponting A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitl…

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Chris Ponting @cgatist.bsky.social · 20/05/2026

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. ☑️ 💪

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Audrey Ryback @aryback.bsky.social · 04/05/2026

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.

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Lucibee @lucibee.bsky.social · 27/03/2026

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

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ThereForME @thereforme.bsky.social · 26/03/2026

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)

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 25/03/2026

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.

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Audrey Ryback @aryback.bsky.social · 23/03/2026

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.

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.

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Arthur @unrealarthur.bsky.social · 20/03/2026

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.

Screenshot highlighting differences between old MOD guidance on ME/CFS and updated version with highlights

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Tom Kindlon @tomkindlon.bsky.social · 23/02/2026

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/

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Lucibee @lucibee.bsky.social · 09/02/2026

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

Email sent to NHS elearning enquiries on 12 January 2026.

Subject - Request for information.

Dear NHSE elearning hub,

I am making a freedom of information request (FOIA 2000) for the following data.

In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS:

1. An introduction to ME/CFS (May 2024).
2. ME/CFS: guidance for community-based healthcare practitioners (January 2025).
3. Managing Severe ME/CFS (September 2025).

Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available).

I am happy for your response to be sent to this email address.

Many thanks for your help,

Lucy B

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Tessa Munt MP 🔶 @tessamunt.bsky.social · 21/01/2026

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.

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Long Covid Advocacy @longcovidadvoc.com · 18/01/2026

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.

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Adam @abrokenbattery.bsky.social · 08/01/2026

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?...

youtu.be

BBC Inside Science - £1.1M ME/CFS and Long Covid Study

YouTube video by Broken Battery

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ThereForME @thereforme.bsky.social · 15/12/2025

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. ✨

Photo of a smiling long-haired lady in a polaroid-style frame on a starry background, marked with a bright star labelled ‘15’. Text says: ‘Thank you for being #ThereForME, Nicky Proctor!’ and ‘Advent Calendar 2025’.

Graphic of a letter on a starry blue background. The letter says “Nicky, you're a supreme advocate for pwME - continuously striving to educate, inform & instigate change across every sector & level, be it friend/peer groups to healthcare providers & their management plus local MPs. You are amazing in every way. ” Hashtag #ThereForME at the bottom.

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Elke Hausmann @drelke.bsky.social · 06/12/2025

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??

Screenshot from the Visible app Clinical Trial page including ‚Balance Acceptance and Commitment Therapy‘ for Long Covid

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Anne @anneinayrshire.bsky.social · 02/12/2025

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

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Michiel @murtoz.bsky.social · 27/11/2025

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

crunchme.org

CrunchME - Data & Research Visuals

Shareable visuals giving insight into key aspects of ME/CFS, long COVID, and other infection-associated chronic illnesses

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ThereForME @thereforme.bsky.social · 25/11/2025

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

Campaign Update 28. Five takeaways from Westminster Hall. MPs turned out in force. Clear cross party consensus on need for action. Severe and very severe ME got airtime. Argument for research funding bolstered. Stronger DHSC rhetoric. New #ThereForME Substack post.

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Adam @abrokenbattery.bsky.social · 19/11/2025

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?...

youtu.be

Westminster Hall Debate on Support for People with ME/CFS - November 2025

YouTube video by Broken Battery

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Arthur @unrealarthur.bsky.social · 06/11/2025

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…

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Long Covid Advocacy @longcovidadvoc.com · 05/11/2025

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...

gov.uk

Keep Britain Working Review: Final report

Keep Britain Working is an independent review of the role of employers in tackling health based economic inactivity and promoting healthy and inclusive workplaces.

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Long Covid UK @longcoviduk.bsky.social · 31/10/2025

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.

Promotional graphic for a YouTube livestream titled “Hydration, Appetite, and Blood Sugar in POTS.” On the left is Dr. Kane, and on the right is Dr. Harriet Carroll. Text below reads: “Dr. Kane talks with Dr. Harriet Carroll. LIVE: Wednesday 5th November 2025 18:00 (GMT).” Logos for The Long Covid Clinic and Long Covid Support appear in the center. Bottom banner reads: “The Long Covid Clinic – What You Can Do. YouTube @LCCWYCD.”

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Chris Giles @chrisgiles.ft.com · 15/10/2025

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...

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George Monbiot @georgemonbiot.bsky.social · 08/10/2025

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...

theguardian.com

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

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sarah boothby @swastrosarah.bsky.social · 06/10/2025

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

record.senedd.wales

Motion - NNDM8884 - Welsh Parliament

The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.

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sarah boothby @swastrosarah.bsky.social · 03/10/2025

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

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 24/09/2025

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

t.co

https://www.youtube.com/watch?v=7jENpyRnYbE

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sarah boothby @swastrosarah.bsky.social · 13/09/2025

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

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Brian Hughes @bmhughes.bsky.social · 09/09/2025

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

hse.ie

Myalgic Encephalomyelitis (ME) - HSE.ie

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sarah boothby @swastrosarah.bsky.social · 08/09/2025

🧵 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

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Severe ME Difrifol Cymru @severemecymru.bsky.social · 31/08/2025

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

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Steve Fifield @stevefifield.bsky.social · 29/08/2025

🔥 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

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sarah boothby @swastrosarah.bsky.social · 19/08/2025

'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

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Adam @abrokenbattery.bsky.social · 11/08/2025

🧵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)

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sarah boothby @swastrosarah.bsky.social · 10/08/2025

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

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sarah boothby @swastrosarah.bsky.social · 10/08/2025

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

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sarah boothby @swastrosarah.bsky.social · 10/08/2025

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

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