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...
#pwME reminder that Savannah needs our help.
Please email the CEO of the hospital she is in, ben.travis@nhs.net, with just the title “Restore pain relief to Savannah NOW”
Also please keep donating to and sharing her fundraiser.
Please email the CEO of the hospital she is in, ben.travis@nhs.net, with just the title “Restore pain relief to Savannah NOW”
Also please keep donating to and sharing her fundraiser.
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 6:23 PM
#pwME reminder that Savannah needs our help.
Please email the CEO of the hospital she is in, ben.travis@nhs.net, with just the title “Restore pain relief to Savannah NOW”
Also please keep donating to and sharing her fundraiser.
Please email the CEO of the hospital she is in, ben.travis@nhs.net, with just the title “Restore pain relief to Savannah NOW”
Also please keep donating to and sharing her fundraiser.
Reposted by Michiel
All mod cons - from my ME/CFS photo project
glass.photo/andrewgiffor...
ALT: colour photo of a Vax carpet cleaner, made of black and transparent plastic, standing in the corner of a blue walled room, surrounded by fluff and dust
#Photography #MECFS #LongCovid #StillLife
glass.photo/andrewgiffor...
ALT: colour photo of a Vax carpet cleaner, made of black and transparent plastic, standing in the corner of a blue walled room, surrounded by fluff and dust
#Photography #MECFS #LongCovid #StillLife
All mod cons:
Andrew Gifford on Glass
glass.photo
February 8, 2026 at 5:10 PM
All mod cons - from my ME/CFS photo project
glass.photo/andrewgiffor...
ALT: colour photo of a Vax carpet cleaner, made of black and transparent plastic, standing in the corner of a blue walled room, surrounded by fluff and dust
#Photography #MECFS #LongCovid #StillLife
glass.photo/andrewgiffor...
ALT: colour photo of a Vax carpet cleaner, made of black and transparent plastic, standing in the corner of a blue walled room, surrounded by fluff and dust
#Photography #MECFS #LongCovid #StillLife
Reposted by Michiel
The thing about this pandemic
Is it made many feel the void inside themselves
Emptiness screamed while the world was silent and still
Their souls tried to tell them it was meant for compassion
But all they could feel was the loss of consumption
In the hole they have yet to fill
Is it made many feel the void inside themselves
Emptiness screamed while the world was silent and still
Their souls tried to tell them it was meant for compassion
But all they could feel was the loss of consumption
In the hole they have yet to fill
February 8, 2026 at 2:18 PM
The thing about this pandemic
Is it made many feel the void inside themselves
Emptiness screamed while the world was silent and still
Their souls tried to tell them it was meant for compassion
But all they could feel was the loss of consumption
In the hole they have yet to fill
Is it made many feel the void inside themselves
Emptiness screamed while the world was silent and still
Their souls tried to tell them it was meant for compassion
But all they could feel was the loss of consumption
In the hole they have yet to fill
Reposted by Michiel
Stop spreading diseases by neglect.
It’s a tool of oppression.
It’s a tool of oppression.
February 8, 2026 at 12:25 PM
Stop spreading diseases by neglect.
It’s a tool of oppression.
It’s a tool of oppression.
Reposted by Michiel
This is so important. Savannah is on her own in the most terrible circumstances. So far the consultants (not specialists in #ME as there are non) are determinedly ignoring advice from Drs who do understand what treatment she should have. Spread the word. It’s literally a life and death situation.
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 10:33 AM
This is so important. Savannah is on her own in the most terrible circumstances. So far the consultants (not specialists in #ME as there are non) are determinedly ignoring advice from Drs who do understand what treatment she should have. Spread the word. It’s literally a life and death situation.
@francesryan.bsky.social @goodlawproject.org
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 8, 2026 at 9:56 AM
@francesryan.bsky.social @goodlawproject.org
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
Are you aware of the below? NHS is slowly starving a severe #ME/CFS patient to death. Ofc it's a woman.
Very similar to how Maeve Boothby died 5 years ago, and despite a prevention of future deaths report, nothing has changed.
Can you help in any way?
Reposted by Michiel
Absolutely, yes. This is why I'm calling it. I've been very polite in the past. But now I realise I'm wasting my time. So I'm going to just complain about it until he actually talks about it in one of his many interviews and discussion panels.
He is missing a trick.
He is missing a trick.
February 7, 2026 at 2:25 PM
Absolutely, yes. This is why I'm calling it. I've been very polite in the past. But now I realise I'm wasting my time. So I'm going to just complain about it until he actually talks about it in one of his many interviews and discussion panels.
He is missing a trick.
He is missing a trick.
Reposted by Michiel
And it’s not just mental heath crises. Fully half of the people killed by police in the US have a disability.
What folx need to understand is that cops are not well-trained in deescalation or conflict resolution.
All they have that we don’t is that gun, and permission to use it to end a conflict.
What folx need to understand is that cops are not well-trained in deescalation or conflict resolution.
All they have that we don’t is that gun, and permission to use it to end a conflict.
Half of People Killed by Police Have a Disability: Report
"Police have become the default responders to mental health calls"
www.nbcnews.com
February 7, 2026 at 7:23 PM
And it’s not just mental heath crises. Fully half of the people killed by police in the US have a disability.
What folx need to understand is that cops are not well-trained in deescalation or conflict resolution.
All they have that we don’t is that gun, and permission to use it to end a conflict.
What folx need to understand is that cops are not well-trained in deescalation or conflict resolution.
All they have that we don’t is that gun, and permission to use it to end a conflict.
Reposted by Michiel
The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
February 7, 2026 at 8:13 PM
The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
Reposted by Michiel
The risk of the airborne transmission of disease correlates with the amount of infectious exhaled aerosol. Since people exhale CO2 with aerosol, its conc has been used as proxy for exhaled aerosol
In this article, researchers propose a new way to estimate risk of transmission
In this article, researchers propose a new way to estimate risk of transmission
February 7, 2026 at 6:46 PM
The risk of the airborne transmission of disease correlates with the amount of infectious exhaled aerosol. Since people exhale CO2 with aerosol, its conc has been used as proxy for exhaled aerosol
In this article, researchers propose a new way to estimate risk of transmission
In this article, researchers propose a new way to estimate risk of transmission
@zackpolanski.bsky.social I know you're busy with important matters - but Savannah will die at the hands of the NHS if nobody takes action - and they aren't.
Please can you get involved?
@greensagainstcovid.bsky.social @greenparty.org.uk can someone closer to Zack get his eyes on the below pls!
Please can you get involved?
@greensagainstcovid.bsky.social @greenparty.org.uk can someone closer to Zack get his eyes on the below pls!
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 8:01 PM
@zackpolanski.bsky.social I know you're busy with important matters - but Savannah will die at the hands of the NHS if nobody takes action - and they aren't.
Please can you get involved?
@greensagainstcovid.bsky.social @greenparty.org.uk can someone closer to Zack get his eyes on the below pls!
Please can you get involved?
@greensagainstcovid.bsky.social @greenparty.org.uk can someone closer to Zack get his eyes on the below pls!
@ashleydaltonmp.bsky.social @tessamunt.bsky.social
You're out of time for discussions. Someone needs to ACT NOW or Savannah will die. It might already be too late.
PLEASE overrule the hospital before they kill her.
She has her own experts who know how to treat her. They need to be listened to.
You're out of time for discussions. Someone needs to ACT NOW or Savannah will die. It might already be too late.
PLEASE overrule the hospital before they kill her.
She has her own experts who know how to treat her. They need to be listened to.
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 6:29 PM
@ashleydaltonmp.bsky.social @tessamunt.bsky.social
You're out of time for discussions. Someone needs to ACT NOW or Savannah will die. It might already be too late.
PLEASE overrule the hospital before they kill her.
She has her own experts who know how to treat her. They need to be listened to.
You're out of time for discussions. Someone needs to ACT NOW or Savannah will die. It might already be too late.
PLEASE overrule the hospital before they kill her.
She has her own experts who know how to treat her. They need to be listened to.
#mecfs #pwME
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
There's an update on Savannah's fundraiser and it is fucking grim.
The hospital have not changed course. Continuing to reduce pain meds. Still not reinstated antihistamine meaning Savannah's had no meaningful nutrition in 7 fucking weeks.
This is MURDER.
All 3 updates are from today.
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
February 7, 2026 at 6:19 PM
Reposted by Michiel
Fascinating preliminary finding: Correa-da-Silva et al. see a near-complete loss of CRH-neurons in 5 postmortem brain samples of people with #MEcfs, not seen in many controls. A corresponding loss of cortisol in the cerebrospinal fluid was also observed.
www.youtube.com/watch?v=30Dk... (7-13mins)
www.youtube.com/watch?v=30Dk... (7-13mins)
February 7, 2026 at 12:12 PM
Fascinating preliminary finding: Correa-da-Silva et al. see a near-complete loss of CRH-neurons in 5 postmortem brain samples of people with #MEcfs, not seen in many controls. A corresponding loss of cortisol in the cerebrospinal fluid was also observed.
www.youtube.com/watch?v=30Dk... (7-13mins)
www.youtube.com/watch?v=30Dk... (7-13mins)
Reposted by Michiel
MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02...
#MyalgicEncephalomyelitis
#MyalgicEncephalomyelitis
February 7, 2026 at 12:25 PM
MEAction UK is working on a survey of #pwME with the University of East Anglia (UEA) Medical School to assist in developing a research application. For more Info & take part: meaction.org.uk/news/2026/02...
#MyalgicEncephalomyelitis
#MyalgicEncephalomyelitis
Reposted by Michiel
Worse and worse.
'Labour Together' was a pretty ironic name, really.
'Labour Together' was a pretty ironic name, really.
Interview with Paul Holden, author of "The Fraud" and one of McSweeney's targets.
‘Labour Together broke the law’ open.substack.com/pub/democrac...
‘Labour Together broke the law’ open.substack.com/pub/democrac...
‘Labour Together broke the law’
The think tank that propelled Starmer to power hired private investigators to shut down scrutiny of its dark money - I speak to one of its targets, journalist Paul Holden
open.substack.com
February 7, 2026 at 11:17 AM
Worse and worse.
'Labour Together' was a pretty ironic name, really.
'Labour Together' was a pretty ironic name, really.
Reposted by Michiel
Why do we keep pretending that ‘cost-saving’ is at the top of what matters to us in public health? This is an economic priority, not necessarily a health one. We get too sucked into trying to be ‘pragmatic’ & lose sight of the notion that such an ideological stance is a choice not an inevitability.
February 7, 2026 at 10:45 AM
Why do we keep pretending that ‘cost-saving’ is at the top of what matters to us in public health? This is an economic priority, not necessarily a health one. We get too sucked into trying to be ‘pragmatic’ & lose sight of the notion that such an ideological stance is a choice not an inevitability.
Reposted by Michiel
www.theguardian.com/australia-ne...
The impacts of locking under 16 yos from their social media networks are now beginning to bite for those young people who relied on them for social connection
The impacts of locking under 16 yos from their social media networks are now beginning to bite for those young people who relied on them for social connection
‘I’ve lost my friends’: advocacy groups warn Australia’s social media ban risks isolating kids with disabilities
Despite the ban’s aim to protect young people, experts are concerned that those in marginalised communities or living with disabilities could lose vital support networks
www.theguardian.com
February 7, 2026 at 3:38 AM
www.theguardian.com/australia-ne...
The impacts of locking under 16 yos from their social media networks are now beginning to bite for those young people who relied on them for social connection
The impacts of locking under 16 yos from their social media networks are now beginning to bite for those young people who relied on them for social connection
Reposted by Michiel
Four more people w/ #MyalgicEncephalomyelitis died this past week and no one except other #pwME is discussing it b/c most don't know.
"Chronic Fatigue Syndrome" was a hideous misnomer from the start--crushing fatigue is one symptom out of 200--& the CDC failed miserably in coining the name in 1988
"Chronic Fatigue Syndrome" was a hideous misnomer from the start--crushing fatigue is one symptom out of 200--& the CDC failed miserably in coining the name in 1988
February 6, 2026 at 9:27 PM
Four more people w/ #MyalgicEncephalomyelitis died this past week and no one except other #pwME is discussing it b/c most don't know.
"Chronic Fatigue Syndrome" was a hideous misnomer from the start--crushing fatigue is one symptom out of 200--& the CDC failed miserably in coining the name in 1988
"Chronic Fatigue Syndrome" was a hideous misnomer from the start--crushing fatigue is one symptom out of 200--& the CDC failed miserably in coining the name in 1988
Reposted by Michiel
I read through hundreds of emails and scoured through years of correspondence and background information to write this 4600 word report.
It confirms what we all have been saying about the anti-trans movement from the start. Read it from the top down, I can't even begin to summarize it all properly.
It confirms what we all have been saying about the anti-trans movement from the start. Read it from the top down, I can't even begin to summarize it all properly.
You’re not crazy. The anti-trans movement is not organic; it was funded by pedophilic billionaires like Jeffrey Epstein who backed a network of conservatives to accuse the same people they were sexually abusing of being the real danger. @madycast.com exposes the truth in our in-depth report.
Epstein Backed ‘Billionaires’ Dinner’ Network of Prominent Anti-Trans Figures
Lawrence Krauss, Richard Dawkins, Steven Pinker and other anti-trans influencers personally benefited from a right-wing academic social group backed by infamous human trafficker Jeffrey Epstein, somet...
transnews.network
February 6, 2026 at 8:21 PM
I read through hundreds of emails and scoured through years of correspondence and background information to write this 4600 word report.
It confirms what we all have been saying about the anti-trans movement from the start. Read it from the top down, I can't even begin to summarize it all properly.
It confirms what we all have been saying about the anti-trans movement from the start. Read it from the top down, I can't even begin to summarize it all properly.
Reposted by Michiel
He's disabled. They're going to murder him because he's disabled.
A man taken into custody in Rochester Thursday by federal immigration agents and now held at the Whipple Federal Building in the Twin Cities is a recent organ transplant recipient who is without his needed anti-rejection medication, state Rep. Kim Hicks tells MPR News.
Transplant recipient arrested by federal agents in Rochester needs medicine, state representative says
State Rep. Kim Hicks told MPR News she drove to the Whipple Federal Building near Ft. Snelling Thursday night to give the man his medication but authorities wouldn't take it without a doctor's note. S...
www.mprnews.org
February 6, 2026 at 9:18 PM
He's disabled. They're going to murder him because he's disabled.
Reposted by Michiel
After over 18 months of requesting my GP's surgery contact me via any means other than by phone (talking leads to PEM) & being ignored repeatedly, they've finally agreed to use email to contact me
I quoted '21 @nicecomms.bsky.social guidelines for #ME &
the Equality Act, Reasonable Adjustments
I quoted '21 @nicecomms.bsky.social guidelines for #ME &
the Equality Act, Reasonable Adjustments
February 6, 2026 at 7:42 PM
After over 18 months of requesting my GP's surgery contact me via any means other than by phone (talking leads to PEM) & being ignored repeatedly, they've finally agreed to use email to contact me
I quoted '21 @nicecomms.bsky.social guidelines for #ME &
the Equality Act, Reasonable Adjustments
I quoted '21 @nicecomms.bsky.social guidelines for #ME &
the Equality Act, Reasonable Adjustments
Reposted by Michiel
I had an MCAS flare last night.
Foot (where a bee stung it six months ago) itchy, anxiety up and face was intermittently VERY red all day.
Tried to figure it out and realized it was bc of sitting IN THE SUN.
I am already allergic to water on my skin, now the sun.
DONT GET COVID
Foot (where a bee stung it six months ago) itchy, anxiety up and face was intermittently VERY red all day.
Tried to figure it out and realized it was bc of sitting IN THE SUN.
I am already allergic to water on my skin, now the sun.
DONT GET COVID
I went out and sat in the sun ☀️ bc it is so nice out.
Let me tell you that was a mistake.
I forgot how painful sun PEM is bc I’ve been so good about not doing it.
Let me tell you that was a mistake.
I forgot how painful sun PEM is bc I’ve been so good about not doing it.
a cartoon of spongebob and a sun with red eyes
Alt: a cartoon of spongebob and a sun with red eyes. SpongeBobs bed is on fire.
media.tenor.com
February 6, 2026 at 8:08 PM
I had an MCAS flare last night.
Foot (where a bee stung it six months ago) itchy, anxiety up and face was intermittently VERY red all day.
Tried to figure it out and realized it was bc of sitting IN THE SUN.
I am already allergic to water on my skin, now the sun.
DONT GET COVID
Foot (where a bee stung it six months ago) itchy, anxiety up and face was intermittently VERY red all day.
Tried to figure it out and realized it was bc of sitting IN THE SUN.
I am already allergic to water on my skin, now the sun.
DONT GET COVID
Reposted by Michiel
Because people asked, I want to point folks to some archiving resources that were circulated at the start of the admin's takedown of federal data at CDC, AskJAN, NIH, and discuss why keeping our data is so important.
A thread 🧵
A thread 🧵
February 6, 2026 at 6:03 PM
Because people asked, I want to point folks to some archiving resources that were circulated at the start of the admin's takedown of federal data at CDC, AskJAN, NIH, and discuss why keeping our data is so important.
A thread 🧵
A thread 🧵