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...
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 🧵
Reposted by Michiel
I wrote a letter to the Editor about this 👇 paper showing cerebral hypoperfusion in antiphospholipid syndrome (APS), to emphasise the potential link to dysautonomia. Delighted to say, it has been published, and you should be able to see it here:
www.sciencedirect.com/science/arti...
🧵
www.sciencedirect.com/science/arti...
🧵
![Dear Editor,
I read with interest the paper by Mameli et al. [1] finding further evidence of cerebral hypoperfusion in primary antiphospholipid syndrome (APS) patients. The authors propose the mechanism for this is likely due to (immune-mediated) microvascular impairment. Whilst I agree this is likely a key part of the pathophysiology, I am curious whether the finding of cerebral hypoperfusion could also be due to, or indicative of, dysautonomia. Dysautonomia is increasingly being recognised to be related to—and I suspect perhaps even caused by—APS [2], [3] as the authors briefly mentioned.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:uszvfokmysq2uc5xmtwhzyft/bafkreicluv7ktwauxiage2kcnxu6nvtbf5qlc5u2qk4v5vu4old7wbpqf4@jpeg)
February 6, 2026 at 6:33 PM
I wrote a letter to the Editor about this 👇 paper showing cerebral hypoperfusion in antiphospholipid syndrome (APS), to emphasise the potential link to dysautonomia. Delighted to say, it has been published, and you should be able to see it here:
www.sciencedirect.com/science/arti...
🧵
www.sciencedirect.com/science/arti...
🧵
Reposted by Michiel
Physios for ME have launched an international survey exploring the experiences of hyperbaric oxygen/oxygen therapy for people with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
www.physiosforme.com/o2survey
www.physiosforme.com/o2survey
February 6, 2026 at 1:17 PM
Physios for ME have launched an international survey exploring the experiences of hyperbaric oxygen/oxygen therapy for people with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
www.physiosforme.com/o2survey
www.physiosforme.com/o2survey
Reposted by Michiel
Authors include Robert Naviaux, Carmen Scheibenbogen, and Bhupesh Prusty
Closing in on the causes of PEM 🎯
#MECFS #LongCovid #ImmuneDysfunction #Mitochondria #AutoImmunity
Closing in on the causes of PEM 🎯
#MECFS #LongCovid #ImmuneDysfunction #Mitochondria #AutoImmunity
Würzburg researchers analyzed IgG from 106 people and found that antibodies from post-infectious ME/CFS patients, including post-COVID cases, disrupt mitochondrial structure in cells and alter inflammation signaling, even without lowering ATP production.
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion
Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae o…
www.sciencedirect.com
February 6, 2026 at 2:26 PM
Authors include Robert Naviaux, Carmen Scheibenbogen, and Bhupesh Prusty
Closing in on the causes of PEM 🎯
#MECFS #LongCovid #ImmuneDysfunction #Mitochondria #AutoImmunity
Closing in on the causes of PEM 🎯
#MECFS #LongCovid #ImmuneDysfunction #Mitochondria #AutoImmunity
Reposted by Michiel
No joke: I got angry hate mail today for writing an obituary of a Black woman scientist—because the person felt she did didn’t deserve the recognition.
Which just makes me want to share it again: www.nature.com/articles/d41...
Which just makes me want to share it again: www.nature.com/articles/d41...
Gladys Mae West obituary: mathematician who pioneered GPS technology
She made key contributions to US cold-war science despite facing huge barriers as a Black woman.
www.nature.com
February 6, 2026 at 9:09 AM
No joke: I got angry hate mail today for writing an obituary of a Black woman scientist—because the person felt she did didn’t deserve the recognition.
Which just makes me want to share it again: www.nature.com/articles/d41...
Which just makes me want to share it again: www.nature.com/articles/d41...
Reposted by Michiel
Am i hopeful these services will be tangibly helpful? Not really. Maybe some milder patients who don't know about ME will get helpful advice on pacing.
But more severe patients cannot be paced out of rolling PEM. When eating exceeds your energy limits you need medical help
But more severe patients cannot be paced out of rolling PEM. When eating exceeds your energy limits you need medical help
February 5, 2026 at 8:35 PM
Am i hopeful these services will be tangibly helpful? Not really. Maybe some milder patients who don't know about ME will get helpful advice on pacing.
But more severe patients cannot be paced out of rolling PEM. When eating exceeds your energy limits you need medical help
But more severe patients cannot be paced out of rolling PEM. When eating exceeds your energy limits you need medical help
Reposted by Michiel
If we flip this round to any other condition, we can see how absurd it is: imagine a fatigue clinic for diabetes where there is zero diabetes experts, and those involved would not prescribe diabetes relevant treatments
February 5, 2026 at 8:35 PM
If we flip this round to any other condition, we can see how absurd it is: imagine a fatigue clinic for diabetes where there is zero diabetes experts, and those involved would not prescribe diabetes relevant treatments
Reposted by Michiel
New service for Highland chronic fatigue syndrome sufferers
www.bbc.co.uk/news/article...
Is this good news? In a way yes, but in other ways, im not thrilled 🧵
www.bbc.co.uk/news/article...
Is this good news? In a way yes, but in other ways, im not thrilled 🧵
NHS Highland to offer virtual chronic fatigue syndrome service
NHS Highland plans to provide the help as part of its long Covid support service.
www.bbc.co.uk
February 5, 2026 at 8:35 PM
New service for Highland chronic fatigue syndrome sufferers
www.bbc.co.uk/news/article...
Is this good news? In a way yes, but in other ways, im not thrilled 🧵
www.bbc.co.uk/news/article...
Is this good news? In a way yes, but in other ways, im not thrilled 🧵