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Michiel

@murtoz.bsky.social

880 followers 2.4K following 2.3K posts

Dutchman in Scotland. Lounge based Landscape Photographer. Medically Retired Hardware Engineer. Tired Tinkerer. FOSS Fan. Ally. PwME/LC. Volunteer with #MEAction Scotland. He/Him. #BIPOCLivesMatter #EndGenocide #CovidIsAirborne #YallMaskin #CleanTheAir

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Michiel @murtoz.bsky.social · Dec 5

I did an interview last week about living with ME. This article is the result.
Pleased with it overall, no glaring errors, and most of my key messages are in the article even if she didn't put some of the more 'difficult' points in there verbatim.

#mecfs #pwME

www.scotsman.com/health/me-ch...

'My daughter has ME, she went into appointments walking and came out in a wheelchair'

There are an estimated 1.3 million people in the UK with ME 🏥

www.scotsman.com

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Lucibee @lucibee.bsky.social · 9h

They've moved this very important debate for pwME to the day of the UK Autumn Budget.

That's not a good look, Senedd. 🤨

Severe ME Difrifol Cymru @severemecymru.bsky.social · 18h

Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.

Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4

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Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 10h

Cognitive and mental health outcomes in long covid
Rapid Response: Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid
www.bmj.com/content/390/...

Excellent letter by Dr Selina Shaw

Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid

www.bmj.com

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Michiel @murtoz.bsky.social · 10h

And again, if we implement clean air technology nobody has to mask. We have the tech. Clean air is a basic human right.

Oh and if people thought masks were uncomfortable they're in for a surprise when they get Long Covid, or worse find themselves in a blacked out room with severe #ME/CFS.

Michiel @murtoz.bsky.social · Jul 26

Spot on - I guess you can't truly understand PEM without having experienced it. But if ALL pwME/LC tell you how terrible it is: believe us!

This illness has a worse health related quality of life than anything it has been compared to in stage 4 cancer, and the reason why is PEM.

A vertical bar graph by CrunchME. Title: "ME/CFS has one of the worst health-related qualities of life of any disease"

The bar graph plots the HRQoL "Mean Score (EQ-5D 3L)" on the y axis, going from 0 to 0.9, and has a range of diseases on the x-axis with their scores. The diseases are sorted from worst to best and ME/CFS is the first one listed meaning it has a lower HRQoL than anything in the graph. It's a big step up from ME (0.47) to the next worst one (Bleeding Ulcer; 0.63)
Here's the list of diseases with their EQ-5D 3L scores:
ME/CFS: 0.47
Bleeding Ulcer: 0.63
COPD: 0.65
Multiple Sclerosis: 0.67
Chronic Renal Failure: 0.68
Rheumatoid Arthritis: 0.69
Lung Cancer: 0.69
Stroke: 0.71
Diabetes Type II: 0.72
Colon Cancer: 0.74
Diabetes Type I: 0.74
Breast Cancer: 0.75
Prostate Cancer: 0.79
General Population: 0.85

"Data Source: Hvidberg et al (2015) 'The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)' | CC BY 4.0"

Graph sourced from https://crunchme.org/

Michiel @murtoz.bsky.social · 10h

sorry but the zero covid folks are not the problem here.

People who care more about their own comfort than the safety of others are the issue. And of course those in power who manipulated us to this point.

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Christophe Veltsos @drinfosec.bsky.social · 12h

Latest 🎯🧵by @david.notesforfriends.com looks at the Covid situation across the pond...

"This wasn’t ignorance. This was dismissal. This was the Prime Minister of the United Kingdom deciding that Long Covid was imaginary because it didn’t fit his agenda..."

🧵
threadreaderapp.com/thread/19779...

The UK Decided Long Covid Doesn’t Exist

They wrote “BOLLOCKS” on the memo.

Boris Johnson saw information about Long Covid symptoms in October 2020. He didn’t ignore it. He didn’t file it away for later review. He picked up a pen and wrote “BOLLOCKS” across it. Then he compared it to Gulf War Syndrome.

That tells you everything.

Four months later, in February 2021, he wrote it again. “Do we really believe in long COVID? Why can’t we hedge it more? I bet it’s complete Gulf War Syndrome stuff.”

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Michiel @murtoz.bsky.social · 11h

Ah, brainfog - in fact we should be arguing the UK has been writing BOLLOCKS on PAIS since McEvedy & Bear in the late 60s.

impact.ed.ac.uk/opinion/me-o...

ME - the origins of a modern medical ‘scandal’ - Edinburgh Impact

The overlooked struggle of Myalgic Encephalomyelitis (ME) sufferers in the UK, revealing systemic medical neglect and societal disregard. Learn about the reasons behind the ongoing dismissal of over 2...

impact.ed.ac.uk

Michiel @murtoz.bsky.social · 11h

It boggles the mind how you can write such a good thread without ever mentioning #ME/CFS and the fact that the culture of denial didn't originate at Boris but at Wessely and whoever knighted him for his work denying gulf war syndrome.

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Ben Nevis @bennevis.bsky.social · 11h

@europeanpowell.bsky.social

"Any future government trying to reform these zones? Corporations sue for “lost future profits” over the remaining contract term.
With 25-year licenses, that’s potentially UNLIMITED liability"

open.substack.com/pub/european...

https://open.substack.com/pub/europeanpowell/p/the-uk-corporate-coup-what-theyre

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sarah boothby @swastrosarah.bsky.social · 12h

🙏 @vladvexler.bsky.social this describes exactly the point being made by Justice4ME.uk.
7 days left to Judicial Review of (England and Wales) UK government Final Delivery Plan for ME. @ashleydaltonmp.bsky.social we want to help you get this.
www.youtube.com/watch?v=_6KS...

When symptoms scarily escalate in ME and Long Covid

YouTube video by Vlad Vexler ME Diary

www.youtube.com

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Pandemic 𓅃. Index @panaccindex.bsky.social · 12h

Heck, I've been regularly compiling and sharing it for years! Sorted by topic/organ, too. www.panaccindex.info/p/what-covid...

What COVID-19 Does to the Body (9th Edition, September 2025)

Your Regular COVID-19 Research Update (80+ Studies)

www.panaccindex.info

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Michiel @murtoz.bsky.social · 11h

... the UK removed free covid vaccines for pregnant women this year. It was deemed "highly unlikely that vaccination in pregnancy would be cost-effective"

www.gov.uk/government/p...

JCVI statement on COVID-19 vaccination in 2025 and spring 2026

www.gov.uk

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Inclusive New Normal @inclusivenew.bsky.social · 12h

You know how we keep being told that repeated reinfection strengthens our immune system, builds population/ herd immunity, so almost no one needs boosters now? Oh dear... 👇 www.aj4/fulltext

COVID-19 is “Airborne AIDS”: provocative oversimplification, emerging science, or something in between?

COVID-19 caused by SARS-CoV-2 is often compared to other pandemics for its societal and global health impact, with some commentators drawing parallels to HIV/AIDS due to the immune dysfunction caused ...

www.ajpmfocus.org

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Michiel @murtoz.bsky.social · 12h

ah yes, the red tories.

Michiel @murtoz.bsky.social · 12h

And they could have mandated the CPD course for all healthcare workers without it costing anything more than an hour of everybody's time.

The sooner people who have PEM hear about pacing, the less likely we are to deteriorate - so it is vital that frontline HCW are PEM aware.

Myalgic Encephalomyelitis | Chronic Fatigue Syndrome | CPD

Deepen your knowledge of chronic fatigue syndrome with our comprehensive resource, comprising of 5 clinical cases.

www.studyprn.com

Reposted by Michiel

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 14h

NHS Scotland ME/CFS provision – NHS Orkney (FOI request)
www.meresearch.org.uk/nhs-scotland...

"NHS Orkney’s annual share is £14,716"

Theyd probs have more impact on ME spending that on widespread FFP3 use and air filtration, than a part time AHP or whatever who can offer nothing more than pacing

NHS Scotland ME/CFS provision – NHS Orkney

The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS has led Rhoda Grant MSP (with assistance fr...

www.meresearch.org.uk

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Yaneer Bar-Yam @yaneerbaryam.bsky.social · 13h

Our new review compares SARS-CoV-2 & HIV on key similarities & outcomes:
–Immune cell (T&other) depletion & dysfunction
–Increases in other infections after COVID
–Rising incidence of signature diseases of immune deficiency
–Limitations of public response
ajpmfocus.org/article/S277...

COVID-19 is “Airborne AIDS”: provocative oversimplification, emerging science, or something in between?

ajpmfocus.org

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sarah boothby @swastrosarah.bsky.social · 17h

"The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh" www.youtube.com/watch?v=1dgK...

Interview with Chris Ponting about PRIME, a project to increase infrastructure for ME/CFS research

YouTube video by David M Tuller

www.youtube.com

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Caroline Lucas @carolinelucas.bsky.social · 16h

Spot on “Many of Labour’s younger voters are already tempted by the Green Party, which combines environmentalism with left wing economics. Now by mocking Green protections & cosying up to developers, chancellor is giving them more reasons to jump ship”. So here it is join.greenparty.org.uk/join-us/

The Guardian view on Labour targeting nature: the problem isn’t snails, but a broken housing model | Editorial

Editorial: Rachel Reeves’s drive to speed up development is beginning to treat wildlife and the environment as expendable. Voters want homes built, but not at any cost

www.theguardian.com

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Michiel @murtoz.bsky.social · 14h

which is exactly how the powers that be wanted it. Not just in the states either, ALL of the west and most of the rest of the world.

There's a word for this.

It's eugenics.

Reposted by Michiel

Shiv Ramdas Mens Rice Activist @nameshiv.bsky.social · 15h

TIL that the aggro af wasps you see in late summer are worker wasps who have finished their nest tasks and are all out seeking sweet stuff and raising hell for the locals with the last days of their lives while waiting to die, wasps are basically just the insect version of retired Brits in Spain

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Michiel @murtoz.bsky.social · 14h

💯

Michiel @murtoz.bsky.social · 14h

When we get independent mainstream journalism again in this country instead of the current capitalist propaganda machine.

Reposted by Michiel

The Real McCoy @rippermd41.bsky.social · 15h

Most people aren’t asking you mask at all times.

They ask that you mask in essential places: public transit, hospitals, doctors’ offices, pharmacies etc.

Places high risk people can’t avoid.

But if you hate wearing masks? Then advocate for indoor air quality: ventilation, filtration, etc.

jamelle @jamellebouie.net · 22h

yeah, i think a commitment to public health obligates you to get vaccinated and, when you are sick, do what you can to avoid spreading that to other people. the demand that one mask at all times in public spaces is, i think, unreasonable.

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Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 14h

Its taken a bit longer than i anticipated & tbh im still not back to my baseline but im "back" in business—if you want to discuss anything long covid, postvac, ME, MCAS, POTS, chronic illness in general etc you can book here:
lc-sc.co.uk/book-an-appo...
Or email: [email protected]

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Michiel @murtoz.bsky.social · 14h

Fair and understandable. Thank you.