Arthur

The Cost of Indifference The sad and curious case of the chronic fatigue syndrome. headshot Samuel Kronen 22 Feb 2026 · 16 min read Double exposure of adult with long hair in bed under blanket, silhouette on wall in dim bedroom. Megan te Boekhorst on Unsplash.

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

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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

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

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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 Inside Science - £1.1M ME/CFS and Long Covid Study YouTube video by Broken Battery

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?...

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.

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. ✨

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

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

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

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.

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

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Westminster Hall Debate on Support for People with ME/CFS - November 2025 YouTube video by Broken Battery

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?...

@abrokenbattery.bsky.social

Review Finds the UK Is Sliding into an Avoidable Workplace Sickness Crisis YouTube video by Good Morning Britain

Source: youtu.be/7mN6ZltATMo?...

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…

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.

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...

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.”

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...

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

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...

Motion - NNDM8884 - Welsh Parliament The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.

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
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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

What is ME? Explore what ME is and understand its symptoms, how many people it effects, and the damaging impact it has on people's lives.

@actionforme.bsky.social ’s estimate page: www.actionforme.org.uk/supporting-y...?

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

The Violence of Psychologisation of Postviral Illnes - Matthies-Boon, Fritz, Hannibal and Nicolas YouTube video by Vivienne Matthies-Boon

@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
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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