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
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 🧵
Reposted by Michiel
What i would rather see: this money being spent sending doctors away for training at established clinics like Bateman Horne. Funding POTS and MCAS services with actual experts. Creating guidelines for off-label prescribing specific to these conditions. Getting scientists involved
February 5, 2026 at 8:35 PM
What i would rather see: this money being spent sending doctors away for training at established clinics like Bateman Horne. Funding POTS and MCAS services with actual experts. Creating guidelines for off-label prescribing specific to these conditions. Getting scientists involved
Reposted by Michiel
NHS Highland have announced that its new virtual service for ME/CFS will be available "from spring"
NHS Highland's full spending proposal is available to read here bit.ly/4a9Ium4
#MyalgicE/hashtag/MyalgicEncephalomyelitis" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
NHS Highland's full spending proposal is available to read here bit.ly/4a9Ium4
#MyalgicE/hashtag/MyalgicEncephalomyelitis" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
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 2:02 PM
NHS Highland have announced that its new virtual service for ME/CFS will be available "from spring"
NHS Highland's full spending proposal is available to read here bit.ly/4a9Ium4
#MyalgicE/hashtag/MyalgicEncephalomyelitis" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
NHS Highland's full spending proposal is available to read here bit.ly/4a9Ium4
#MyalgicE/hashtag/MyalgicEncephalomyelitis" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
Reposted by Michiel
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
02 Chamber survey | Physiosforme
www.physiosforme.com
February 5, 2026 at 6:39 PM
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Reposted by Michiel
"De keuze is simpel: blijven we betalen voor langdurige uitval, of investeren we nu in herstel, kennis en perspectief? Voor BV Nederland is het antwoord helder. Investeren in PAIS-centra en onderzoek is niet alleen rechtvaardig, maar vooral verstandig."
www.volkskrant.nl/columns-opin...
www.volkskrant.nl/columns-opin...
Opinie: Investeren in PAIS is geen kostenpost, maar een verstandige investering
Andere landen investeren al grootschalig in onderzoek rond langdurige klachten na infecties. Nederland dreigt achter te blijven, terwijl juist onze kennisinfrastructuur bij uitstek geschikt is om hier...
www.volkskrant.nl
February 5, 2026 at 2:51 PM
"De keuze is simpel: blijven we betalen voor langdurige uitval, of investeren we nu in herstel, kennis en perspectief? Voor BV Nederland is het antwoord helder. Investeren in PAIS-centra en onderzoek is niet alleen rechtvaardig, maar vooral verstandig."
www.volkskrant.nl/columns-opin...
www.volkskrant.nl/columns-opin...
Reposted by Michiel
such freedom to get reinfected with a virus that rewrites our immune systems from inside our bone marrow, reactivates dormant cancer cells, and causes damage with every infection, half of which are asymptomatic!
February 5, 2026 at 2:52 PM
such freedom to get reinfected with a virus that rewrites our immune systems from inside our bone marrow, reactivates dormant cancer cells, and causes damage with every infection, half of which are asymptomatic!
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...