Michiel
@murtoz.bsky.social
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
Pinned
Michiel
@murtoz.bsky.social
· Dec 5
'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
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...
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...
I would guess it has something to do with Germany being one of ... two? European countries where the government is actually honest about long COVID and trying to tackle it.
2nd being Netherlands (ish) and the media narrative has been changing there too.
2nd being Netherlands (ish) and the media narrative has been changing there too.
February 5, 2026 at 11:02 AM
I would guess it has something to do with Germany being one of ... two? European countries where the government is actually honest about long COVID and trying to tackle it.
2nd being Netherlands (ish) and the media narrative has been changing there too.
2nd being Netherlands (ish) and the media narrative has been changing there too.
Reposted by Michiel
It is fantastic, excellent in-depth issue.
I sincerely don't understand the radical difference btw the scientific, up to date, informative and humane coverage in almost all german media and the rest of European media about #pwME.
I sincerely don't understand the radical difference btw the scientific, up to date, informative and humane coverage in almost all german media and the rest of European media about #pwME.
February 5, 2026 at 10:23 AM
It is fantastic, excellent in-depth issue.
I sincerely don't understand the radical difference btw the scientific, up to date, informative and humane coverage in almost all german media and the rest of European media about #pwME.
I sincerely don't understand the radical difference btw the scientific, up to date, informative and humane coverage in almost all german media and the rest of European media about #pwME.
Reposted by Michiel
Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.
February 4, 2026 at 4:05 PM
Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.
Reposted by Michiel
You see Wes Streeting, you can try and delete your approving tweets of Mandelson, but you can't delete your approval of Palantir, because your grubby mits are all over it, and guess what? Now you're embroiled with the Mandelson issue all over again.
Starmer should kick you out as well.
Starmer should kick you out as well.
📌 ICYMI — Jeffrey Epstein ‘Co-Owned’ Venture Fund with Palantir Founder as it Entered UK Government
The Russian connected convicted sex trafficker co-owned a fund…
https://bylinetimes.com/2026/02/04/jeffrey-epstein-and-peter-thiel-co-owned-venture-fund-as-thiels-palantir-entered-uk-government/
The Russian connected convicted sex trafficker co-owned a fund…
https://bylinetimes.com/2026/02/04/jeffrey-epstein-and-peter-thiel-co-owned-venture-fund-as-thiels-palantir-entered-uk-government/
Jeffrey Epstein 'Co-Owned' Venture Fund with Palantir Founder as it Entered UK Government
The Russian connected convicted sex trafficker co-owned a fund with Peter Thiel, now embedded in Britain’s most critical infrastructure with the help of Peter Mandelson
bylinetimes.com
February 5, 2026 at 9:54 AM
You see Wes Streeting, you can try and delete your approving tweets of Mandelson, but you can't delete your approval of Palantir, because your grubby mits are all over it, and guess what? Now you're embroiled with the Mandelson issue all over again.
Starmer should kick you out as well.
Starmer should kick you out as well.
Reposted by Michiel
'Still whitewashing Britain: #race, #class and the UK #citizenship test'
New from #Identities, by Anna Tuckett
With #OpenAccess:
doi.org/10.1080/1070...
Anna Tuckett @nasarmeer.bsky.social Aaron Winter Taylor & Francis Research
New from #Identities, by Anna Tuckett
With #OpenAccess:
doi.org/10.1080/1070...
Anna Tuckett @nasarmeer.bsky.social Aaron Winter Taylor & Francis Research
February 5, 2026 at 10:00 AM
'Still whitewashing Britain: #race, #class and the UK #citizenship test'
New from #Identities, by Anna Tuckett
With #OpenAccess:
doi.org/10.1080/1070...
Anna Tuckett @nasarmeer.bsky.social Aaron Winter Taylor & Francis Research
New from #Identities, by Anna Tuckett
With #OpenAccess:
doi.org/10.1080/1070...
Anna Tuckett @nasarmeer.bsky.social Aaron Winter Taylor & Francis Research
so he's done yet another u-turn? figures.
🚨 NEW: Keir Starmer will hold a speech tomorrow to say Britain is stronger as a "tolerant, decent and respectful country"
February 5, 2026 at 10:18 AM
so he's done yet another u-turn? figures.
Reposted by Michiel
You cannot trust #NigelFarage with the #NHS he simply wants to sell it off to the private sector to make profits at the expense of NHS patients & staff
If you love the NHS & want to make it better for everyone #VoteGreen in #Gorton&Denton
greenparty.org.uk/about/our-ma...
bsky.app/profile/gree...
If you love the NHS & want to make it better for everyone #VoteGreen in #Gorton&Denton
greenparty.org.uk/about/our-ma...
bsky.app/profile/gree...
You can't trust Farage and Reform with the NHS
February 5, 2026 at 9:40 AM
You cannot trust #NigelFarage with the #NHS he simply wants to sell it off to the private sector to make profits at the expense of NHS patients & staff
If you love the NHS & want to make it better for everyone #VoteGreen in #Gorton&Denton
greenparty.org.uk/about/our-ma...
bsky.app/profile/gree...
If you love the NHS & want to make it better for everyone #VoteGreen in #Gorton&Denton
greenparty.org.uk/about/our-ma...
bsky.app/profile/gree...
Reposted by Michiel
You! Yes, you! The person talking about covid/long covid on social media YOU ARE MAKING A DIFFERENCE!
My dad, who doesn’t understand LC, just messaged me bc he saw a reel on insta about long covid and all of a sudden has a bunch of questions!
KEEP TALKING! EVERYWHERE! ALL THE TIME!
My dad, who doesn’t understand LC, just messaged me bc he saw a reel on insta about long covid and all of a sudden has a bunch of questions!
KEEP TALKING! EVERYWHERE! ALL THE TIME!
February 5, 2026 at 12:33 AM
You! Yes, you! The person talking about covid/long covid on social media YOU ARE MAKING A DIFFERENCE!
My dad, who doesn’t understand LC, just messaged me bc he saw a reel on insta about long covid and all of a sudden has a bunch of questions!
KEEP TALKING! EVERYWHERE! ALL THE TIME!
My dad, who doesn’t understand LC, just messaged me bc he saw a reel on insta about long covid and all of a sudden has a bunch of questions!
KEEP TALKING! EVERYWHERE! ALL THE TIME!
Reposted by Michiel
Und was macht ihr am 6.März?
Ich darf da im Rahmen der Veranstaltung "Post-COVID hat ein Geschlecht – Neueste Erkenntnisse und aktuelle Herausforderungen für Betroffene" anlässlich des Frauentags von unserer Forschung erzählen.
Die Veranstaltung ist komplett online, eine Anmeldung ist nötig.
Ich darf da im Rahmen der Veranstaltung "Post-COVID hat ein Geschlecht – Neueste Erkenntnisse und aktuelle Herausforderungen für Betroffene" anlässlich des Frauentags von unserer Forschung erzählen.
Die Veranstaltung ist komplett online, eine Anmeldung ist nötig.
Post-COVID hat ein Geschlecht – Neueste Erkenntnisse und aktuelle Herausforderungen für Betroffene - Berlin.de
www.berlin.de
February 5, 2026 at 7:19 AM
Und was macht ihr am 6.März?
Ich darf da im Rahmen der Veranstaltung "Post-COVID hat ein Geschlecht – Neueste Erkenntnisse und aktuelle Herausforderungen für Betroffene" anlässlich des Frauentags von unserer Forschung erzählen.
Die Veranstaltung ist komplett online, eine Anmeldung ist nötig.
Ich darf da im Rahmen der Veranstaltung "Post-COVID hat ein Geschlecht – Neueste Erkenntnisse und aktuelle Herausforderungen für Betroffene" anlässlich des Frauentags von unserer Forschung erzählen.
Die Veranstaltung ist komplett online, eine Anmeldung ist nötig.
Reposted by Michiel
The media and those in power love stories about folks who can no longer have high-stress jobs but found meaning in gardening & writing. My #pwMe friends and I can only dream of gardening & finishing a book. We achieve monk levels of stress management & gratitude daily. Our pain & grief remain.
February 5, 2026 at 7:39 AM
The media and those in power love stories about folks who can no longer have high-stress jobs but found meaning in gardening & writing. My #pwMe friends and I can only dream of gardening & finishing a book. We achieve monk levels of stress management & gratitude daily. Our pain & grief remain.
Reposted by Michiel
We can stop harm by clearly explaining #PostExertionalMalaise and #MCAS (which I exhibited without knowing back in High School- over 20 years ago). And we can advocate for recognition of the horror and abandonment of people #SevereME, including those that dipped straight into it through #LongCovid
February 5, 2026 at 7:36 AM
We can stop harm by clearly explaining #PostExertionalMalaise and #MCAS (which I exhibited without knowing back in High School- over 20 years ago). And we can advocate for recognition of the horror and abandonment of people #SevereME, including those that dipped straight into it through #LongCovid
Reposted by Michiel
They don’t need to be told, like me, that it’s all linked to trauma or stress. Shouldn’t need to settle and settle into a smaller life, blaming themselves, until they’re homebound or bedbound. We can change their horizon by highlighting biomedical research and calling for more investment in science
February 5, 2026 at 7:33 AM
They don’t need to be told, like me, that it’s all linked to trauma or stress. Shouldn’t need to settle and settle into a smaller life, blaming themselves, until they’re homebound or bedbound. We can change their horizon by highlighting biomedical research and calling for more investment in science
Reposted by Michiel
We need academics & communicators to shed light on the health & human rights scandal of #SevereME. And to sound the alarm about #LongCovid. My illness has been progressive & I worry about teens now unable to dance like before but still able to study, embarking on a slow story of exponential loss…
February 5, 2026 at 7:31 AM
We need academics & communicators to shed light on the health & human rights scandal of #SevereME. And to sound the alarm about #LongCovid. My illness has been progressive & I worry about teens now unable to dance like before but still able to study, embarking on a slow story of exponential loss…
Reposted by Michiel
#GreatestMEdicalScandal and #MEKills are the story. I’m privileged to have supportive family & friends and access to healthcare. My QOL is abysmal and I’m only moderate. What we need are biomedical treatments. Not discussions of trauma before we get more research funding.
February 5, 2026 at 7:18 AM
#GreatestMEdicalScandal and #MEKills are the story. I’m privileged to have supportive family & friends and access to healthcare. My QOL is abysmal and I’m only moderate. What we need are biomedical treatments. Not discussions of trauma before we get more research funding.
Reposted by Michiel
There is a huge gap between doctors' gut feelings and the reality of people affected by #MECFS.
Studies from 🇩🇪, 🇨🇭, and 🇦🇹 show that late diagnoses, psychological misattribution,
inadequate support, and high levels of dissatisfaction are
more the rule than the exception.
Studies from 🇩🇪, 🇨🇭, and 🇦🇹 show that late diagnoses, psychological misattribution,
inadequate support, and high levels of dissatisfaction are
more the rule than the exception.
Zwischen ärztlichem Bauchgefühl und der Realität von #MECFS-Betroffenen klafft eine große Lücke.
Studien aus DE/CH/AT zeigen: späte Diagnosen, Psychologisierung,
unzureichende Begleitung und hohe Unzufriedenheit sind
eher Regel als Ausnahme.
Danke,
@neurostingl.bsky.social
für den Faktencheck!
Studien aus DE/CH/AT zeigen: späte Diagnosen, Psychologisierung,
unzureichende Begleitung und hohe Unzufriedenheit sind
eher Regel als Ausnahme.
Danke,
@neurostingl.bsky.social
für den Faktencheck!
Auf Twitter hat mir heute ein eminenter Allgemeinmedizinier kommuniziert, dass er davon ausgehe, dass 90% aller Patient*innen mit #MECFS in Hausarztpraxen versorgt und zu ihrer Zufriedenheit betreut werden.
Interessante Meinung, aber in Diskrepanz zu den Daten aus dem DACH-Raum.
▶️ 1/7
Interessante Meinung, aber in Diskrepanz zu den Daten aus dem DACH-Raum.
▶️ 1/7
February 4, 2026 at 10:42 PM
There is a huge gap between doctors' gut feelings and the reality of people affected by #MECFS.
Studies from 🇩🇪, 🇨🇭, and 🇦🇹 show that late diagnoses, psychological misattribution,
inadequate support, and high levels of dissatisfaction are
more the rule than the exception.
Studies from 🇩🇪, 🇨🇭, and 🇦🇹 show that late diagnoses, psychological misattribution,
inadequate support, and high levels of dissatisfaction are
more the rule than the exception.
Reposted by Michiel
Hi all!
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
Long Covid friends—
A bill in the Maryland legislature would create an R&D fund for LC—a big deal when new federal funding is stalled.
The advocate behind the bill is asking for people anywhere to submit written testimony on Fri 2/6 on your experience w/LC, to say why this is needed!
More info:
A bill in the Maryland legislature would create an R&D fund for LC—a big deal when new federal funding is stalled.
The advocate behind the bill is asking for people anywhere to submit written testimony on Fri 2/6 on your experience w/LC, to say why this is needed!
More info:
Sign the Petition
Advocate for Maryland HB 0027 for Long COVID R&D
www.change.org
February 4, 2026 at 8:46 PM
Hi all!
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
Reposted by Michiel
The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials.
#MEAction partnered with #NotJustFatigue to secure this support.
#NIH
#MEAction partnered with #NotJustFatigue to secure this support.
#NIH
February 4, 2026 at 6:19 PM
The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials.
#MEAction partnered with #NotJustFatigue to secure this support.
#NIH
#MEAction partnered with #NotJustFatigue to secure this support.
#NIH
Apparently the emails in the Epstein files show that, not only did Bill Gates get an STD from his extramarital sexual activity, he was planning to give STD meds to his then-wife without her knowing:
In an interview with NPR, Melinda French Gates confirmed that she ended her marriage with Bill Gates because of allegations contained in the Epstein files.
February 4, 2026 at 6:59 PM
Reposted by Michiel
Many diseases were once called “psychological” or “all in the mind”.
Again and again, biology later proved otherwise.
This thread shows clear cases where medicine got it wrong, then changed its mind once real mechanisms were found.
Again and again, biology later proved otherwise.
This thread shows clear cases where medicine got it wrong, then changed its mind once real mechanisms were found.
February 4, 2026 at 12:28 PM
Many diseases were once called “psychological” or “all in the mind”.
Again and again, biology later proved otherwise.
This thread shows clear cases where medicine got it wrong, then changed its mind once real mechanisms were found.
Again and again, biology later proved otherwise.
This thread shows clear cases where medicine got it wrong, then changed its mind once real mechanisms were found.
Reposted by Michiel
Highlighting the speaker who stood in front of the Surprise mayor and told him to consider what the Mayor of Ohrdruf must’ve thought before he died by suicide: “He might have thought ‘how is this my fault I had no jurisdiction over this’ maybe he said ‘this site was not subject to local zoning.’”
February 4, 2026 at 6:43 AM
Highlighting the speaker who stood in front of the Surprise mayor and told him to consider what the Mayor of Ohrdruf must’ve thought before he died by suicide: “He might have thought ‘how is this my fault I had no jurisdiction over this’ maybe he said ‘this site was not subject to local zoning.’”
Reposted by Michiel
We’ve joined Easy Fundraising 🎉💙
You can now support Long Covid Advocacy for free just by doing your usual online shopping - solidarity in action!
All our profit goes to biomedical research! 🧪
🔗 Sign up & choose LCA as your cause:
www.easyfundraising.org.uk/causes/long-...
You can now support Long Covid Advocacy for free just by doing your usual online shopping - solidarity in action!
All our profit goes to biomedical research! 🧪
🔗 Sign up & choose LCA as your cause:
www.easyfundraising.org.uk/causes/long-...
You spend, brands donate to Long Covid Advocacy.
Help us when you shop with 7,000+ brands. Join now.
www.easyfundraising.org.uk
February 4, 2026 at 8:45 AM
We’ve joined Easy Fundraising 🎉💙
You can now support Long Covid Advocacy for free just by doing your usual online shopping - solidarity in action!
All our profit goes to biomedical research! 🧪
🔗 Sign up & choose LCA as your cause:
www.easyfundraising.org.uk/causes/long-...
You can now support Long Covid Advocacy for free just by doing your usual online shopping - solidarity in action!
All our profit goes to biomedical research! 🧪
🔗 Sign up & choose LCA as your cause:
www.easyfundraising.org.uk/causes/long-...
shows you - yet again - they are working for the billionaire class.
There's only one party in the UK that has the ovaries to be honest with us about covid, long covid, and the importance of indoor air quality.
Labour's happy to infect many more, and then deny them help, and then BLAME them for it.
There's only one party in the UK that has the ovaries to be honest with us about covid, long covid, and the importance of indoor air quality.
Labour's happy to infect many more, and then deny them help, and then BLAME them for it.
Our policy on #covid and #longcovid was the first step. Protocols need to change. Safer public spaces through #IndoorAirQuality and #ventilation. Understanding the effectiveness of #FFP3 masks. #boldpolitics in terms of public health. Not engaging with the harms of Covid is a #politicalchoice.
February 4, 2026 at 9:39 AM
shows you - yet again - they are working for the billionaire class.
There's only one party in the UK that has the ovaries to be honest with us about covid, long covid, and the importance of indoor air quality.
Labour's happy to infect many more, and then deny them help, and then BLAME them for it.
There's only one party in the UK that has the ovaries to be honest with us about covid, long covid, and the importance of indoor air quality.
Labour's happy to infect many more, and then deny them help, and then BLAME them for it.
it is so vile and disingenuous. They know full well what happened at the end of 2019 to cause a 50% rise in PIP applicants.
And it is a problem of the uk govt's own making by refusing to follow the science in favour of profits.
And labour not being able to admit that, let alone change IPC guidance
And it is a problem of the uk govt's own making by refusing to follow the science in favour of profits.
And labour not being able to admit that, let alone change IPC guidance
February 4, 2026 at 9:35 AM
it is so vile and disingenuous. They know full well what happened at the end of 2019 to cause a 50% rise in PIP applicants.
And it is a problem of the uk govt's own making by refusing to follow the science in favour of profits.
And labour not being able to admit that, let alone change IPC guidance
And it is a problem of the uk govt's own making by refusing to follow the science in favour of profits.
And labour not being able to admit that, let alone change IPC guidance
Reposted by Michiel
Be afraid. Be very afraid. Because these people will have been VERY cherry picked.
#disability #mecfs #disabled
#disability #mecfs #disabled
Disability experts appointed to lead first ever full review of Personal Independence Payment
Twelve experts appointed to the steering group for the Timms Review of Personal Independence Payment (PIP).
www.gov.uk
February 4, 2026 at 7:43 AM
Be afraid. Be very afraid. Because these people will have been VERY cherry picked.
#disability #mecfs #disabled
#disability #mecfs #disabled