Tessera
Folgen

Arthur

@unrealarthur.bsky.social

ME Patient-ly Waiting for Biomedical Research | Volunteer @crunchme.bsky.social #GreatestMEdicalScandal @unreal_arthur crunchme.org

64 Posts374 Follower901 Folgt
George Monbiot@georgemonbiot.bsky.social · 2w ago

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

George Monbiot@georgemonbiot.bsky.social · 2w ago

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...

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

theguardian.com

sarah boothby@swastrosarah.bsky.social · 2mo ago

petitions.senedd.wales/signatures/2... Please sign and share. You do not have to be resident in Wales to show your support. #pwME #LongCovidME

Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care

Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the conditi...

petitions.senedd.wales

Chris Ponting@cgatist.bsky.social · 2mo ago

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...

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…

mecfsresearchreview.me

Audrey Ryback@aryback.bsky.social · 5mo ago

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.

SSimon McGrath@simonmcg.bsky.social · 5mo ago

A great interview with Dr Audrey Ryback about the recent finding of two consistent age peaks in many European countries for the onset of ME/CFS. Follow-up work using the @actionforme.bsky.social Big Survey data hopes to give insight into early vs late onset differences @aryback.bsky.social.

Lucibee@lucibee.bsky.social · 7mo ago

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

Tom Kindlon@tomkindlon.bsky.social · 7mo ago

It's 8th anniversary of this paper A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop. That surely wasn't because the real results weren't as flattering as they had presented them? bmcpsychology.biomedcentral.com/articles/10.... #MECFS

R E S E A R C H A R T I C L E Open Access Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT Carolyn E. Wilshire 1* , Tom Kindlon2 , Robert Courtney3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 and Bruce Levin 7 Abstract Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence. Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole. Results: On the original protocol-specified primary outcome measure - overall improvement rates - there was a significant effect of treatment group. However, the groups receiving CBT or GET did not significantly outperform the Control group after correcting for the number of comparisons specified in the trial protocol. Also, rates of recovery were consistently low and not significantly different across treatment groups. Finally, on secondary measures, significant effects were almost entirely confined to self-report measures. These effects did not endure beyond two years. Conclusions: These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases. Keywords: Chronic fatigue syndrome, Myalgic ence
ThereForME@thereforme.bsky.social · 7mo ago

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)

Bild
Tessa Munt MP 🔶@tessamunt.bsky.social · 7mo ago

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.

Long Covid Advocacy@longcovidadvoc.com · 7mo ago

📖 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 💙

Covid Inquiry Module 3, healthcare report: 'We came masked. We changed minds'

Opinion | 22 March 2026By Lara Wong, Founder and CEO, Clinically Vulnerable FamiliesOn Thursday, the Covid Inquiry published its report on healthcare. For Clinically Vulnerable Families it is a…

clinicallyvulnerable.org

Audrey Ryback@aryback.bsky.social · 7mo ago

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.
Arthur@unrealarthur.bsky.social · 7mo ago

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
Arthur@unrealarthur.bsky.social · 2y ago

1/3 Update: Good News! MP wrote to the minister and this was their reply, "I can confirm that the guidance regarding cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) is outdated and will be removed..."

Chris Ponting@cgatist.bsky.social · 8mo ago

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...

PRIME – building infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis | Bionow

PRIME is a new MRC-funded project aimed at bringing together patients/patient groups, academic & clinical researchers and industry to make progress in the understanding and treatment of Myalgic Enceph...

bionow.co.uk

Long Covid Advocacy@longcovidadvoc.com · 9mo ago

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.

Elke Hausmann@drelke.bsky.social · 10mo ago

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
Royal Free 1955@rfh1955.bsky.social · 11mo ago

Today, twenty-six years ago. The Observer, UK. 21st November 1999. Observer: "Is chronic fatigue syndrome a state of mind?" "YES Dr Trudie Chalder" Chalder: "Unfortunately, the whole issue has become dangerously polarised" #myalgice #cfsme #myalgicencephalomyelitis #mecfs

Arthur@unrealarthur.bsky.social · 11mo ago

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…

Long Covid Advocacy@longcovidadvoc.com · 11mo ago

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...