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Long Covid Advocacy @longcovidadvoc.com · 06/10/2026

he is extremely detestable.

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Reposted by Michiel

Extraordinary article about ME - its history, controversialisation & how medical ignorance is systemically maintained. Clear & thorough 💫 Brilliant 🧵by Chloe 👇

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Penncat @pennicat.bsky.social · 06/10/2026

Sad but so so true. I have come out of appointments and cried with relief because someone has believed me. Not done anything, mind you. Just believed me.

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Reposted by Michiel

hookland.bsky.social @hookland.bsky.social · 06/10/2026

England of the humming wires. England of the ghosted fields. England of the nephomantic sky. This is where my patriotism lives, not in its ragged flags, but in a land that knows its spectres. – #DAKilroy

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When the only variable is "do we treat pwME and LC together or separately" and the 4 NHS services being evaluated for this are all rehab based, and in at least one case proudly stating they follow BPS principles, this sets off very loud alarm bells in my head.

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@alemmatthees.bsky.social @lucibee.bsky.social @mecfsscience.org I would love to be proven wrong here but the more I look at it, the more I think heritage is designed to cement the rehab service model as the only one available on the NHS.

Work Package 2: Understanding Costs and Models of Care

Led by health economics experts at University of Oxford & collaborators

This work package will:

Analyse NHS and social care costs
Evaluate societal impacts, including ability to work
Compare four real‑world service models:
No specialist service
Separate ME/CFS + LC services
Services considering integration
Fully integrated services
Assess which models are cost‑effective, equitable and scalable

Contact the team at heritage-studyteam@leeds.ac.uk

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And I think our charities must know this too. I see all of them including a disclaimer to the extent of "us recruiting for this study doesn't mean we approve of it". Which does nothing of benefit for pwME. Why won't our charities call this thing out for the dogmatic BS that it so obviously is?

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If I were tasked with designing a study to make sure the bacme rehab clinic model will be the only available model on the NHS in the UK, HERITAGE is what I would come up with. A false premise to hide behind and claim I am delivering evidence based care. As morally corrupt as the pace trial.

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HERITAGE ignores all of that. It doesn't even acknowledge that there are other models beyond the bacme rehab model. The only thing it asks is if our current services will be providing "care" to pwME only, or to pwME and pwLC together in some form. which will not change the lack of care for pwME

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There are so many treatments beyond the rehab model but the NHS ignores these. A lot of different off-label meds that can make a real difference to a pwME QoL and functional capacity. Those of us who can afford to go private to access these treatments and often find benefit.

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heavily based on the mistaken dogma of being deconditioned and just needing to do a bit more gradually. This manual is based on a 2009 BPS book, came out in 2019, last reviewed in 2020. This service isn't NICE NG-206 compliant in any way, so why is it the basis of this study?

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One of these 4 services is the cornwall fatigue service, which is happily telling pwME to do GET in 2026. Sure, they call it graded activity but it is fucking HARMFUL My severe friend attended in july after >12 months wait, only to get a very outdated manual on graded activity...

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or the underlying principles of the supposed care these services provide. No desire to contrast a rehab service model with world leading clinical care. And let's be clear, the 4 NHS services included in this study are very much the opposite of world leading care.

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They say they're comparing 4 "real world" service models - No specialist service - Separate ME/CFS + LC services - Services considering integration - Fully integrated services Whereby the only difference is "do we treat LC with ME or separate" and NOTHING is said about the type of treatments used,

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Arm 1: ppl who attended one of 4 bacme rehab services in the past 3 years. Arm 2: ppl who didn't access any NHS 'specialist' care in the past 3 years. How does this constitute "evaluating different models of service delivery."? They look at 1 (incredibly flawed) model; and contrast it with no care

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 05/10/2026

The more I look at the heritage study, the more it looks like PACE pt II. Govt called it a cost effectiveness study. The study says its aim is to improve future NHS services. But they only look at bacme based rehab services. What about services with actual medical input & off label scrips?

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Reposted by Michiel

Check out our conference poster on defining PEM: positivenutrition.ie/wp-content/u... Coauthors: @naomidharvey.bsky.social @ciarawrightphd.bsky.social @sunsopeningband.bsky.social Full paper currently in draft! 🧵

positivenutrition.ie

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Michiel @murtoz.bsky.social · 05/10/2026

It is real & it's ongoing state sponsored torture. It would be illegal to subject a prisoner of war to the average life of someone with severe ME. It would amount to torture. This is what the NHS and Govt are desperate to dismiss. That they have been torturing us because they think it is cheaper.

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Michiel @murtoz.bsky.social · 05/10/2026

this has to stop, Kim. I know our words are outrageous. But that is because our treatment (and lack thereof) is outrageous, not because we make shit up. It's time for people to start believing pwME, instead of dismissing us yet again because of how inconvenient it would be if this were real.

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Michiel @murtoz.bsky.social · 05/10/2026

I guess you'll find a reason to dismiss this graph too because what on earth could >11k pwME know about their experience of seeking help that simply doesn't exist.

A graph from the 2024 European ME Alliance Pan-European ME Patient Survey of >11000 people with ME.

The graph title is "Experience of supports from Various Actors".
The X-axis goes from -2 (no support) to +2 (very good support).
On the Y-axis are the various actors that might offer support to a pwME. The actors & their scores are as follows
Family: +0.57
Other ME Patients: +0.44
Patient organisations / charities: +0.05
Friends: -0.12
Social Security (disability benefits etc): -0.71
Workplace: -0.72
The health system in general: -0.86
School / educational institution: -0.91
Social Services (child care services / social worker): -1.39

There's a footer below the graph: "Figure 31: The experience of help and support from various actors (scores from -2 (no support) to +2 (very good support)."

source https://europeanmealliance.org/documents/emeaeusurvey/EMEAMEsurveyreport2024.pdf

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Reposted by Michiel

Prometheus Magazine @prometheusmagazine.bsky.social · 03/09/2026

Joe Gallagher and Arianna Introna look at recent British state policy as targeted social murder, contextualising its eugenic function and clarifying the horizons of working-class resistance to this rising tide. prometheus-mag.com/2026/09/03/h...

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Reposted by Michiel

Adam @abrokenbattery.bsky.social · 04/10/2026

My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer 👇

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Emily Sturgess @emilysturge.bsky.social · 03/10/2026

I've come into contact with so many ME/CFS sufferers over the past decade, and not a single one is a malingerer. No-one has just decided they've given up. Every bit of what they've lost has been stolen, not given up.

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Michiel @murtoz.bsky.social · 03/10/2026

Ah but you and I are up to speed with the latest science. JCVI isn't. They consider death the only bad outcome of a covid infection and otherwise cover their ears and go LALALA. They've sacrificed our safety to the lie that covid is over. Because gov't cares more about profit than about people.

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hookland.bsky.social @hookland.bsky.social · 03/10/2026

Books are ghost magnets. This means every good library has it phantoms. A density of Dewey Decimal Classification is spirits what a saucer of beer is to slugs. Of course we understand ghosts desire to haunt libraries. Thousands of books and the time to read them is a heaven. – #CJosiffe #Ghosts

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Michiel @murtoz.bsky.social · 03/10/2026

Hearing good things about fatiguesense

Disability News Service @johnpring.bsky.social · 03/10/2026

Reposted by Michiel

The social security minister has still yet to decide whether secret reviews into deaths linked to the Department for Work and Pensions can be released to grieving relatives, a year after he asked civil servants to examine the issue. #DWP #BenefitDeaths www.disabilitynewsservice.com/no-decision-...

disabilitynewsservice.com

No decision from Timms on releasing secret reports on deaths, a year after speaking to DWP civil servants

The social security minister has still yet to decide whether secret reviews into deaths linked to the Department for Work and Pensions (DWP) can be released to grieving relatives, a year after he a…

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/10/2026

Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪

frontiersin.org

Frontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugs

Long COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...

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Darren Parkinson @greendarrenshipley.bsky.social · 01/10/2026

I am no longer a registered nurse. Not through any choice, but because I got #LongCovid. 2 years ago I lost my nursing job because I'm too ill too work. Today my nursing registration expired. 20+ yrs given to the NHS. Ended by getting a disease without a cure.

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nice *sounding* things that when you look closely turn out to be more gaslighting and hot air. That social service he wants to build? Only for the over 65's. UK govt hates disabled people and are trying to get rid of us as much as they are trying to get rid of trans people.

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Those bacme services are positioned as "specialist" and "clinical", both of which I reject. Anybody offering graded activity to pwME in 2026 is part of the problem, not a credible expert. They're just manufacturing permission for bacme to carry on harming us with NHS approval.

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the other branch "non-clinical" consists entirely of people who have not accessed NHS "specialist" care for ME or LC. Worse yet? At least one of the researchers is a bacme member. So we're letting bacme (the org of our psychologisers) mark their own homework.

have you looked into this study? This is the "cost effectiveness study" the govt alluded to when they announced their precious plan. It has two branches: the "clinical" branch which covers exactly 4 bacme rehab services, one of which tried to get my severe friend to do graded exercise in july 2026