Lightnews — Scholar-powered news

ME Centraal @mecentraal.bsky.social · 11h

Absurd hoe weinig er veranderd is in al die tijd he....

Reposted by ME Centraal

Martje @martjezingt.bsky.social · 1d

#kijktip #longcovid #PAIS #MECFS
"ik wil ook graag leven en van betekenis zijn". Zo herkenbaar&ook verzekeringsperikelen, 35jr geleden dure #AOV opgezegd: had zeer beperkte energie nodig(voor focus oo herstel,niet voor gevecht met verzekeraar @mecentraal.bsky.social @longcovidnederland.bsky.social

Zembla @zembla-bnnvara.bsky.social · 1d

Kijk ons onderzoek naar de strijd tussen long-covidpatiënten en hun verzekeraar terug:
www.bnnvara.nl/zembla/artik...

Kijken: Ziek maar gezond verklaard - Zembla - BNNVARA

In Nederland houden ongeveer 420.000 mensen langdurige klachten na een covid-besmetting. Als ondernemers en zelfstandigen vanwege deze klachten hun arbeidsongeschiktheidsverzekering inschakelen, gaat ...

www.bnnvara.nl

1 1 4

ME Centraal @mecentraal.bsky.social · 3d

💙🫂

1

ME Centraal @mecentraal.bsky.social · 4d

Thanks for sharing, Tom!

Tom Kindlon @tomkindlon.bsky.social · 5d

"Life between hope and fear": ME Centraal @mecentraal.bsky.social , a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

ME Centraal, a Dutch ME-infochannel, asked their regular columnists to write an article on severe ME, to be published on or around 8 August, Severe ME-day. Marieke Suur, a patient with severe ME, wrote the following.

Writing an article about severe ME is not that easy, because how can I express in a few sentences what this life means to me?

The weird thing is that since I was diagnosed with ME early in 2020, I went from moderate to severe ME within a month (that’s what happens when you miss the last step of a flight of stairs and have to undergo two operations and ‘rehabilitate’ for six months). I was relieved with this clear diagnosis after years of searching, but this relief soon turned into despair.

1

Reposted by ME Centraal

Louise Fox 🦊 @louise-fox.bsky.social · 11d

Het is ondraaglijk. Ik wil huilen en schreeuwen vanwege deze ongerechtigheid.

Hoezo ignoreren de dokters dat er al meerdere ME/CVS patiënten zijn verhongerd?

Zijn ze ongeïnformeerd, ongeïnteresseerd of gewoon sadistisch?

Ik hoop dat het goed komt voor Sanne.

1 1 1

ME Centraal @mecentraal.bsky.social · 10d

Er wordt meer waarde gehecht aan protocollen dan aan patiënten of de feiten, zoals dat er inderdaad patiënten op deze manier aan hun einde zijn gekomen. Afschuwelijk en onbegrijpelijk.

1

Reposted by ME Centraal

Sigrid C. Degener @esceedee.bsky.social · 11d

Unfortunaly she is not going to get the treatment 🤬😭

bsky.app/profile/mece...

ME Centraal @mecentraal.bsky.social · 12d

www-omroephorstaandemaas-nl.translate.goog/actueel/uitg...

To our great regret, we must inform you that Sanne has lost the lawsuit filed against three hospitals and will not receive parenteral nutrition... 💔

1 1

ME Centraal @mecentraal.bsky.social · 10d

Only you and a few others can imagine what she and her family must be going through right now...

And here it is, oddly enough not everything got translated, but most of it did; uitspraken-rechtspraak-nl.translate.goog/details?id=E...

Rechtspraak.nl - Zoeken in uitspraken

Zoeken in uitspraken

uitspraken-rechtspraak-nl.translate.goog

1

Reposted by ME Centraal

Long Covid Safety Net @longcovidsafetynet.bsky.social · 12d

The state is starving people with very severe ME.

ME Centraal @mecentraal.bsky.social · 12d

www-omroephorstaandemaas-nl.translate.goog/actueel/uitg...

To our great regret, we must inform you that Sanne has lost the lawsuit filed against three hospitals and will not receive parenteral nutrition... 💔

6 7

ME Centraal @mecentraal.bsky.social · 12d

www-omroephorstaandemaas-nl.translate.goog/actueel/uitg...

To our great regret, we must inform you that Sanne has lost the lawsuit filed against three hospitals and will not receive parenteral nutrition... 💔

3 4 6

Reposted by ME Centraal

Eleanor Fielding @meownersclub.bsky.social · 17d

Sheesh - here it is again! F*cking psychiatrists!
@georgemonbiot.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.

meglobalchronicle.wordpress.com/2025/09/16/i...

www.facebook.com/groups/TheME...

1 2

ME Centraal @mecentraal.bsky.social · 20d

🌍 No. 54 of the ME Global Chronicle is published!

It contains highlights from the past 3 months of ME events around the globe.

meglobalchronicle.wordpress.com/2025/09/24/f...

meglobalchronicle.wordpress.com/2025/09/24/t...

With contributions by @colleensteckel.bsky.social & many more.

#MEcfs

From the editors

Bezoek het bericht voor meer.

meglobalchronicle.wordpress.com

5 7

Reposted by ME Centraal

Sigrid C. Degener @esceedee.bsky.social · 25d

😡😭

ME Centraal @mecentraal.bsky.social · 26d

Unfortunately she will have to wait for a judicial decision for another 2 weeks, unacceptable in this case but apparently this is how the system works 😔 @swastrosarah.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

1 1 1

ME Centraal @mecentraal.bsky.social · 25d

People are dying from ME without a specialist service, please support this important campaign! #Justice4ME

sarah boothby @swastrosarah.bsky.social · 25d

Maddened by such callous regard to family life but otherwise never better. #Justice4ME You?
Justice4me.uk

NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

Justice4me.uk

8 12

ME Centraal @mecentraal.bsky.social · 25d

Also frustrated by everything but for ME-standards I'm not doing too bad, thanks for asking 🙂

1

ME Centraal @mecentraal.bsky.social · 25d

Indeed! Thank you for caring and reaching out despite your own hardship, how are you holding up?

1 1 1

ME Centraal @mecentraal.bsky.social · 26d

Unfortunately she will have to wait for a judicial decision for another 2 weeks, unacceptable in this case but apparently this is how the system works 😔 @swastrosarah.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.

meglobalchronicle.wordpress.com/2025/09/16/i...

www.facebook.com/groups/TheME...

1 6 10

ME Centraal @mecentraal.bsky.social · 26d

We only post about Sanne, I will pass it on to her (team). So much depends on today... 🤞

2 4

Reposted by ME Centraal

Protein and veg and fasting. @mccheapo.bsky.social · 27d

#mecfs

ME Centraal @mecentraal.bsky.social · 28d

On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.

meglobalchronicle.wordpress.com/2025/09/16/i...

www.facebook.com/groups/TheME...

1

Reposted by ME Centraal

Adriaan @adrianusalexander.bsky.social · 27d

bsky.app/profile/mece...

ME Centraal @mecentraal.bsky.social · 28d

We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.

meglobalchronicle.wordpress.com/2025/09/16/i...

www.facebook.com/groups/TheME...

Is Sanne going to be the Dutch Maeve Boothby-O’Neill?

ME patient Sanne (38) denied life-saving treatment ⚖️ Lawyers are taking action this week. Your help is also needed! 38-year-old Sanne van Enckevort from Hegelsom (Limburg, The Netherlands) is seri…

meglobalchronicle.wordpress.com

1 1

ME Centraal @mecentraal.bsky.social · 27d

Thank you so much 💙

1

ME Centraal @mecentraal.bsky.social · 28d

On Thursday there will be a preliminary injunction against the hospital. Pls help by reading & sharing this 🙏 #SaveSanne

@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social

ME Centraal @mecentraal.bsky.social · 28d

We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.

meglobalchronicle.wordpress.com/2025/09/16/i...

www.facebook.com/groups/TheME...

Is Sanne going to be the Dutch Maeve Boothby-O’Neill?

ME patient Sanne (38) denied life-saving treatment ⚖️ Lawyers are taking action this week. Your help is also needed! 38-year-old Sanne van Enckevort from Hegelsom (Limburg, The Netherlands) is seri…

meglobalchronicle.wordpress.com

17 21

ME Centraal @mecentraal.bsky.social · 28d

We also made English posts for the Global Chronicle about the horrible situation Sanne from The Netherlands is in. She's being denied total parenteral nutrition (TPN) by the hospital & her weight is dropping rapidly.

meglobalchronicle.wordpress.com/2025/09/16/i...

www.facebook.com/groups/TheME...

Is Sanne going to be the Dutch Maeve Boothby-O’Neill?

ME patient Sanne (38) denied life-saving treatment ⚖️ Lawyers are taking action this week. Your help is also needed! 38-year-old Sanne van Enckevort from Hegelsom (Limburg, The Netherlands) is seri…

meglobalchronicle.wordpress.com

3 2

ME Centraal @mecentraal.bsky.social · 28d

Hi Sarah! We were active on here for a while, but got so few reposts that we gave up. We could maybe use this account for English posts on occassion only, when it's about something important such as this.

1 2

Reposted by ME Centraal

Litsa Dremousis @litsadremousis.bsky.social · 28d

Let’s mobilize.

#MyalgicEncephalomyelitis #pwME

ME Centraal @mecentraal.bsky.social · 28d

International ME community:
ME patient Sanne (38) is denied life-saving treatment.

Sanne has no time left. Only TPN could save her life, but it is being denied.

Read our website to find out what you can do 👇
& Please read 🧵

mecentraal-wordpress-com.translate.goog/2025/09/16/m...

ME-patiënte Sanne (38) wordt levensreddende behandeling geweigerd

⚖️ Advocaten komen deze week in actie. Jouw hulp is ook nodig!De 38-jarige Sanne van Enckevort uit Hegelsom (Limburg) is ernstig ziek. Ze heeft ME en een daardoor veroorzaakte gastroparese, en daar…

mecentraal-wordpress-com.translate.goog

3 5