Michiel
@murtoz.bsky.social
Horizontal advocate for #pwME. 🇳🇱 in 🏴.
Ally. Cis. PwME/LC. Volunteer with @meactionscotland.bsky.social. He/Him. #SaveSavannah #BIPOCLivesMatter #TransLivesMatter #EndGenocide #CovidIsAirborne #YallMaskin #CleanTheAir
Ally. Cis. PwME/LC. Volunteer with @meactionscotland.bsky.social. He/Him. #SaveSavannah #BIPOCLivesMatter #TransLivesMatter #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
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
September 22, 2026 at 7:21 AM
Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together.
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2
New update from Karen Gordon's dad. www.change.org/p/save-karen...
September 22, 2026 at 8:21 AM
New update from Karen Gordon's dad. www.change.org/p/save-karen...
Reposted by Michiel
She wasn't able to tolerate nutrition because they removed her opioids. She can eat crisps when she can't eat anything else. They are now threatening to remove her opioids again and also her IV saline when she can drink very little. They will then discharge her with no pain control, unable to eat.
September 21, 2026 at 12:19 PM
She wasn't able to tolerate nutrition because they removed her opioids. She can eat crisps when she can't eat anything else. They are now threatening to remove her opioids again and also her IV saline when she can drink very little. They will then discharge her with no pain control, unable to eat.
Reposted by Michiel
Nothing can convince me that the MEA isn't an op at this point.
You won't use funds to help severe patients obtain legal representation when being mistreated in hospitals but you want our money when those doctors kill us?
You won't use funds to help severe patients obtain legal representation when being mistreated in hospitals but you want our money when those doctors kill us?
September 21, 2026 at 2:29 PM
Nothing can convince me that the MEA isn't an op at this point.
You won't use funds to help severe patients obtain legal representation when being mistreated in hospitals but you want our money when those doctors kill us?
You won't use funds to help severe patients obtain legal representation when being mistreated in hospitals but you want our money when those doctors kill us?
Reposted by Michiel
Reposted by Michiel
A harrowing thread of responses here demonstrating not just a failure to treat patients with ME, but an institutional insistence on persecuting, abusing, gaslighting and discrediting them.
People have died. People will die. Lives have been destroyed.
The scale of the injustice is staggering.
People have died. People will die. Lives have been destroyed.
The scale of the injustice is staggering.
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.
September 21, 2026 at 12:24 PM
A harrowing thread of responses here demonstrating not just a failure to treat patients with ME, but an institutional insistence on persecuting, abusing, gaslighting and discrediting them.
People have died. People will die. Lives have been destroyed.
The scale of the injustice is staggering.
People have died. People will die. Lives have been destroyed.
The scale of the injustice is staggering.
Reposted by Michiel
When I chat to people in my area who know my kid is now out of school, who know why, I'm yet to find a single cis person who will say anything like:
'I'm sorry'
'It's really unfair'
'It's terrible what she's experiencing'
Not one
For everyone else persecution is All Just Fine.
'I'm sorry'
'It's really unfair'
'It's terrible what she's experiencing'
Not one
For everyone else persecution is All Just Fine.
September 21, 2026 at 1:55 PM
When I chat to people in my area who know my kid is now out of school, who know why, I'm yet to find a single cis person who will say anything like:
'I'm sorry'
'It's really unfair'
'It's terrible what she's experiencing'
Not one
For everyone else persecution is All Just Fine.
'I'm sorry'
'It's really unfair'
'It's terrible what she's experiencing'
Not one
For everyone else persecution is All Just Fine.
Reposted by Michiel
Jena University Hospital reviewed 714 Long COVID trials. Only 8 made PEM a primary outcome, and just 3 tested treatments aimed at proposed PEM drivers.
Microvascular and bioenergetic mechanisms were essentially untouched.
www.researchsquare.com/article/rs-1...
Microvascular and bioenergetic mechanisms were essentially untouched.
www.researchsquare.com/article/rs-1...
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)
Purpose Despite the substantial health and socioeconomic burden of Post-COVID condition (PCC), no disease-modifying therapy has been established, largely because of clinical heterogeneity and incomple...
www.researchsquare.com
September 21, 2026 at 2:20 PM
Jena University Hospital reviewed 714 Long COVID trials. Only 8 made PEM a primary outcome, and just 3 tested treatments aimed at proposed PEM drivers.
Microvascular and bioenergetic mechanisms were essentially untouched.
www.researchsquare.com/article/rs-1...
Microvascular and bioenergetic mechanisms were essentially untouched.
www.researchsquare.com/article/rs-1...
Reposted by Michiel
September 21st. #HelpFolksLive2026 thread. Something's *always* due & food is *always* needed. Things only get better with community action. *Now* is when folks need food, water, shelter, meds. *Now* is when we/the community needs to be there for each other. There's no one else. Just us.
September 21, 2026 at 1:47 PM
September 21st. #HelpFolksLive2026 thread. Something's *always* due & food is *always* needed. Things only get better with community action. *Now* is when folks need food, water, shelter, meds. *Now* is when we/the community needs to be there for each other. There's no one else. Just us.
Reposted by Michiel
it's rare that the public hears about our lives from us, and I am so passionate about giving people with my disease a place to express themselves.
if you see this thread and are interested in participating, feel free to DM me! I want to show how many of us are out there.
if you see this thread and are interested in participating, feel free to DM me! I want to show how many of us are out there.
September 21, 2026 at 1:36 PM
it's rare that the public hears about our lives from us, and I am so passionate about giving people with my disease a place to express themselves.
if you see this thread and are interested in participating, feel free to DM me! I want to show how many of us are out there.
if you see this thread and are interested in participating, feel free to DM me! I want to show how many of us are out there.
Reposted by Michiel
in starting my interview series, I'm realizing just how clever the asynchronous format is. it makes things possible for both interviewer and interviewee that never would be otherwise.
in terms of harm reduction, this is the best way of interacting with people who have severe ME.
in terms of harm reduction, this is the best way of interacting with people who have severe ME.
September 21, 2026 at 1:26 PM
in starting my interview series, I'm realizing just how clever the asynchronous format is. it makes things possible for both interviewer and interviewee that never would be otherwise.
in terms of harm reduction, this is the best way of interacting with people who have severe ME.
in terms of harm reduction, this is the best way of interacting with people who have severe ME.
Reposted by Michiel
Another friend has fallen sick with post-viral illness. That makes 8 ppl we knew before Covid (incl. my wife) that were generally healthy and working and now live with a profound disability. Of the 8, only 3 can work even part-time. Only 1 is past retirement age. Such a tragedy. #LongCovid #MECFS
September 21, 2026 at 12:24 PM
Another friend has fallen sick with post-viral illness. That makes 8 ppl we knew before Covid (incl. my wife) that were generally healthy and working and now live with a profound disability. Of the 8, only 3 can work even part-time. Only 1 is past retirement age. Such a tragedy. #LongCovid #MECFS
Reposted by Michiel
People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.
Read more: bit.ly/4h5GsH5
#mecfs #cfs #pwme
Read more: bit.ly/4h5GsH5
#mecfs #cfs #pwme
September 21, 2026 at 12:36 PM
People with ME/CFS are harmed not only by the disease itself, but also by the repeated demand to justify and defend their lived experience of the physical illness, and emotionally manage other people’s disbelief, finds paper by Sven Walter.
Read more: bit.ly/4h5GsH5
#mecfs #cfs #pwme
Read more: bit.ly/4h5GsH5
#mecfs #cfs #pwme
Reposted by Michiel
Brilliant, thank you so much, George. This means everything to us. Had recent experience with London hospital that I will share with you via email. Ultimately discharged myself before 'treatment' could begin.
September 21, 2026 at 10:33 AM
Brilliant, thank you so much, George. This means everything to us. Had recent experience with London hospital that I will share with you via email. Ultimately discharged myself before 'treatment' could begin.
Reposted by Michiel
I think the Royal College’s position is crucial in this. They are mainly responsible for the lack of education on the ground and in med schools. Someone we all know is still pulling the strings from above. GET/GE are being used but called by other names now and the NHS website is still downplaying
September 21, 2026 at 9:56 AM
I think the Royal College’s position is crucial in this. They are mainly responsible for the lack of education on the ground and in med schools. Someone we all know is still pulling the strings from above. GET/GE are being used but called by other names now and the NHS website is still downplaying
Reposted by Michiel
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.
September 21, 2026 at 8:19 AM
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers:
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.
Are any of you still being offered inappropriate (psych/GET etc) "treatments"?
Please email george at monbiot dot info. Thanks.
Reposted by Michiel
Can I please get help with dinner? Anything helps. I can show the receipt. Scared it broke the bank and will effect housing. Cashapp took loan money too. But I haven’t eaten in 16 hours and couldn’t wait
Even a few dollars is appreciated!
Kofi - posted
paypal: nachash358
cash app: doriangrey358
Even a few dollars is appreciated!
Kofi - posted
paypal: nachash358
cash app: doriangrey358
September 21, 2026 at 5:06 AM
Can I please get help with dinner? Anything helps. I can show the receipt. Scared it broke the bank and will effect housing. Cashapp took loan money too. But I haven’t eaten in 16 hours and couldn’t wait
Even a few dollars is appreciated!
Kofi - posted
paypal: nachash358
cash app: doriangrey358
Even a few dollars is appreciated!
Kofi - posted
paypal: nachash358
cash app: doriangrey358
Reposted by Michiel
Let this be my dy**g legacy.
A wee update from NCIF Pakistan 🌍
Neglected Chronic Illnesses Foundation Pakistan is changing its name and widening its focus. 🧡💙
A wee update from NCIF Pakistan 🌍
Neglected Chronic Illnesses Foundation Pakistan is changing its name and widening its focus. 🧡💙
September 20, 2026 at 10:46 PM
Let this be my dy**g legacy.
A wee update from NCIF Pakistan 🌍
Neglected Chronic Illnesses Foundation Pakistan is changing its name and widening its focus. 🧡💙
A wee update from NCIF Pakistan 🌍
Neglected Chronic Illnesses Foundation Pakistan is changing its name and widening its focus. 🧡💙
Reposted by Michiel
y’all don’t go looking for this but. one thing I really wish everyone would internalise is that we’re not gonna win against the puritans, or the fascists, or anyone else, by accepting any part of their premise as valid. they do not have legit concerns
September 20, 2026 at 6:23 PM
y’all don’t go looking for this but. one thing I really wish everyone would internalise is that we’re not gonna win against the puritans, or the fascists, or anyone else, by accepting any part of their premise as valid. they do not have legit concerns
Reposted by Michiel
Saving the Learning Disabilities, Autism and Neurodiversity Bill bellacaledonia.org.uk/2026/09/20/s...
Saving the Learning Disabilities, Autism and Neurodiversity Bill
According to the journalist James McEnaney: “The SNP is accused of cruelty and a ‘betrayal’ of disabled people after John Swinney’s government abandoned plans for a new disa…
bellacaledonia.org.uk
September 20, 2026 at 6:07 PM
Saving the Learning Disabilities, Autism and Neurodiversity Bill bellacaledonia.org.uk/2026/09/20/s...
Reposted by Michiel
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.
This looks really amazing!!
vimeo.com/user10350947...
#pwme #myalgicE #millionsmissing #severeME
This looks really amazing!!
vimeo.com/user10350947...
#pwme #myalgicE #millionsmissing #severeME
September 20, 2026 at 6:58 PM
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark.
This looks really amazing!!
vimeo.com/user10350947...
#pwme #myalgicE #millionsmissing #severeME
This looks really amazing!!
vimeo.com/user10350947...
#pwme #myalgicE #millionsmissing #severeME
Reposted by Michiel
Also the only Islamic centre in Cornwall was attacked a few days ago and there has been no public outcry. They covered the building in oil possibly intending arson 👀
www.bbc.co.uk/news/article...
www.bbc.co.uk/news/article...
Racially aggravated damage at Cornwall Islamic Community Centre
Police are treating it as racially aggravated criminal damage until evidence suggests otherwise.
www.bbc.co.uk
September 20, 2026 at 6:05 PM
Also the only Islamic centre in Cornwall was attacked a few days ago and there has been no public outcry. They covered the building in oil possibly intending arson 👀
www.bbc.co.uk/news/article...
www.bbc.co.uk/news/article...
Reposted by Michiel
Begrudgingly sharing my #mutualaid request again since I'm unfortunately still in need 😓 Any bit of help, shares, or kind words would be SO appreciated!
#disabilitycrowdfund #longcovid #chronicpain #EDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism
#disabilitycrowdfund #longcovid #chronicpain #EDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism
I can't afford my 80 buck meds this month bc I'm #disabled & #chronicallyill. Idk what else to do! I'm doing badly w/o my meds.😖
If anyone could help, it'd mean SO much. Any little bit, retweet, or kind words are appreciated. I'M SORRY! 😭
PP: paypal.me/motleychick
CA: #$IZZI6
Venmo: @egdirbretla
If anyone could help, it'd mean SO much. Any little bit, retweet, or kind words are appreciated. I'M SORRY! 😭
PP: paypal.me/motleychick
CA: #$IZZI6
Venmo: @egdirbretla
September 20, 2026 at 5:16 PM
Begrudgingly sharing my #mutualaid request again since I'm unfortunately still in need 😓 Any bit of help, shares, or kind words would be SO appreciated!
#disabilitycrowdfund #longcovid #chronicpain #EDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism
#disabilitycrowdfund #longcovid #chronicpain #EDS #POTS #crowdfund #emergencycrowdfund #spoonie #NEISvoid #MECFS #AuDHD #actuallyautistic #autism
Reposted by Michiel
A blog about the response of many denialist dismissive cognitive dissonance comments on social media whenever they are confronted with very severe ME in the media.
anilvanderzee.com/the-rush-to-...
#pwme #myalgicE #millionsmissing
anilvanderzee.com/the-rush-to-...
#pwme #myalgicE #millionsmissing
The rush to dismiss severe ME or Long Covid in the media may harm you or your loved ones in the future. - Anil van der Zee
The last couple of weeks my social media has had a lot more traffic. Partly due to my own story in the media, but also because other people with (very) severe ME or infectious associated chronic illne...
anilvanderzee.com
September 20, 2026 at 4:06 PM
A blog about the response of many denialist dismissive cognitive dissonance comments on social media whenever they are confronted with very severe ME in the media.
anilvanderzee.com/the-rush-to-...
#pwme #myalgicE #millionsmissing
anilvanderzee.com/the-rush-to-...
#pwme #myalgicE #millionsmissing
Reposted by Michiel
"This guy" I have blocked since about day 5 on Bluesky.
Was trying to hook up with everyone in ME Community.
Is a well known PACE trial advocate. Could be SW or SMC for all I know so full of 💩
Was trying to hook up with everyone in ME Community.
Is a well known PACE trial advocate. Could be SW or SMC for all I know so full of 💩
September 20, 2026 at 4:24 PM
"This guy" I have blocked since about day 5 on Bluesky.
Was trying to hook up with everyone in ME Community.
Is a well known PACE trial advocate. Could be SW or SMC for all I know so full of 💩
Was trying to hook up with everyone in ME Community.
Is a well known PACE trial advocate. Could be SW or SMC for all I know so full of 💩