Nele
@nelehelena.bsky.social
I'll "tweet" here about the things I don't like if the other app goes down
Reposted by Nele
Autoimmunity, here we come at last! 👏👏💪💪
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
This research goes so deep the headline doesn't do it justice. Very big moment in medicine: shines a bright light on how ebv affects b-cells. Plenty of that light is spilling over to multiple sclerosis too. Perhaps can even illuminate rheumatoid arthritis and #mecfs.
Epstein-Barr virus appears to be trigger of lupus disease, say scientists
November 13, 2025 at 10:24 AM
Autoimmunity, here we come at last! 👏👏💪💪
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm.
#GreatestMEdicalScandal
Pretty decent article in the dutch magazine for psychiatrists about #POTS
This is important considering POTS is a neurological syndrome that's often mistaken for a psychiatric illness. The article explains this very well.
And it mentions ME + PEM!
www.tijdschriftvoorpsychiatrie.nl/nl/tijdschri...
This is important considering POTS is a neurological syndrome that's often mistaken for a psychiatric illness. The article explains this very well.
And it mentions ME + PEM!
www.tijdschriftvoorpsychiatrie.nl/nl/tijdschri...
Tijdschrift voor Psychiatrie
Uitgave van de Stichting Tijdschrift voor Psychiatrie waarin participeren de Nederlandse Vereniging voor Psychiatrie en de Vlaamse Vereniging voor Psychiatrie.
www.tijdschriftvoorpsychiatrie.nl
November 7, 2025 at 2:12 PM
Pretty decent article in the dutch magazine for psychiatrists about #POTS
This is important considering POTS is a neurological syndrome that's often mistaken for a psychiatric illness. The article explains this very well.
And it mentions ME + PEM!
www.tijdschriftvoorpsychiatrie.nl/nl/tijdschri...
This is important considering POTS is a neurological syndrome that's often mistaken for a psychiatric illness. The article explains this very well.
And it mentions ME + PEM!
www.tijdschriftvoorpsychiatrie.nl/nl/tijdschri...
Reposted by Nele
@bmhughes.bsky.social makes a good point in his new book.
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
November 5, 2025 at 2:23 PM
@bmhughes.bsky.social makes a good point in his new book.
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
I'm so excited about Zohran Mamdani and I'm not even American 🥹
November 5, 2025 at 9:18 AM
I'm so excited about Zohran Mamdani and I'm not even American 🥹
Reposted by Nele
Mamdani stood up to Tom Homan.
He’s stood up for immigrants, trans people and all marginalized individuals.
A Muslim immigrant has just become Mayor of NYC at a time when the President is doing everything he can to vilify and destroy immigrants.
It’s a huge friggin win.
He’s stood up for immigrants, trans people and all marginalized individuals.
A Muslim immigrant has just become Mayor of NYC at a time when the President is doing everything he can to vilify and destroy immigrants.
It’s a huge friggin win.
New York assemblyman Zohran Mamdani confronts Border Czar Tom Homan today in Albany 👇🏻
November 5, 2025 at 4:27 AM
Mamdani stood up to Tom Homan.
He’s stood up for immigrants, trans people and all marginalized individuals.
A Muslim immigrant has just become Mayor of NYC at a time when the President is doing everything he can to vilify and destroy immigrants.
It’s a huge friggin win.
He’s stood up for immigrants, trans people and all marginalized individuals.
A Muslim immigrant has just become Mayor of NYC at a time when the President is doing everything he can to vilify and destroy immigrants.
It’s a huge friggin win.
Reposted by Nele
Open brief aan onze politici.
Delen is lief!
Delen is lief!
November 2, 2025 at 4:12 PM
Open brief aan onze politici.
Delen is lief!
Delen is lief!
Reposted by Nele
If you can, please consider donating to the Open Medicine Foundation this November. Your donation will be trippled 3️⃣✖️! OMF supports some of the most promising research to better understand and treat #MECFS & #LongCovid, which are making the lives of millions of patients deeply miserable. Thank you 🙏
🌟Triple Giving November is back! From November 1 to December 2, all gifts to OMF will be tripled, up to $500,000, thanks to generous matching donors.
👉 Triple your gift today and learn about other ways to support OMF: ow.ly/6RrM50XlkLk.
#pwME #MECFS #pwLC #LongCOVID
👉 Triple your gift today and learn about other ways to support OMF: ow.ly/6RrM50XlkLk.
#pwME #MECFS #pwLC #LongCOVID
November 2, 2025 at 2:06 PM
If you can, please consider donating to the Open Medicine Foundation this November. Your donation will be trippled 3️⃣✖️! OMF supports some of the most promising research to better understand and treat #MECFS & #LongCovid, which are making the lives of millions of patients deeply miserable. Thank you 🙏
Dit hebben we ook nodig in België! En dan niet alleen voor long covid maar ook voor ME/cvs, POTS, etc. Want de dingen waar covid toe kan leiden zijn niet nieuw. 1/
@groenbe.bsky.social
@bartdhondt.bsky.social
@conner-rousseau.bsky.social
@vooruit-nu.bsky.social
www.volkskrant.nl/wetenschap/s...
@groenbe.bsky.social
@bartdhondt.bsky.social
@conner-rousseau.bsky.social
@vooruit-nu.bsky.social
www.volkskrant.nl/wetenschap/s...
Speciale centra voor postcovid zijn een jaar open: ‘Stapsgewijs krijgen patiënten iets meer kwaliteit van leven’
De eerste Nederlandse expertisecentra voor postcovid openden een jaar geleden de deuren. Hebben de patiënten, die bijna allemaal extreem vermoeid zijn, er al wat aan? ‘We zorgen voor de patiënten en t...
www.volkskrant.nl
November 1, 2025 at 9:19 AM
Dit hebben we ook nodig in België! En dan niet alleen voor long covid maar ook voor ME/cvs, POTS, etc. Want de dingen waar covid toe kan leiden zijn niet nieuw. 1/
@groenbe.bsky.social
@bartdhondt.bsky.social
@conner-rousseau.bsky.social
@vooruit-nu.bsky.social
www.volkskrant.nl/wetenschap/s...
@groenbe.bsky.social
@bartdhondt.bsky.social
@conner-rousseau.bsky.social
@vooruit-nu.bsky.social
www.volkskrant.nl/wetenschap/s...
Reposted by Nele
Reposted by Nele
"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...
No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’
www.medscape.com
October 31, 2025 at 1:18 PM
"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...
Last night I dreamed that I was at a party, french kissing a random dude. And god I really miss those days.
#SevereChronicIllness
#SevereChronicIllness
October 31, 2025 at 12:15 PM
Last night I dreamed that I was at a party, french kissing a random dude. And god I really miss those days.
#SevereChronicIllness
#SevereChronicIllness
Will @bsky.app ever have the option to set your account to private? I'm starting to use this more, but my nervous system can't handle not having the option to go private when I need to.
October 31, 2025 at 9:59 AM
Will @bsky.app ever have the option to set your account to private? I'm starting to use this more, but my nervous system can't handle not having the option to go private when I need to.
Reposted by Nele
If I could go to a Halloween party, I would go as a doctor and repeatedly tell people "your labs are fine" "it's stress" "you're just deconditioned". I would whisper it in their ear.
#ChronicIllness #MedicalGaslighting
#ChronicIllness #MedicalGaslighting
October 30, 2025 at 2:25 PM
If I could go to a Halloween party, I would go as a doctor and repeatedly tell people "your labs are fine" "it's stress" "you're just deconditioned". I would whisper it in their ear.
#ChronicIllness #MedicalGaslighting
#ChronicIllness #MedicalGaslighting
Reposted by Nele
How do we love what we can't save — a planet, or a body?
I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system...
#MyalgicE #mecfs #ClimateAction #climatecrisis
I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system...
#MyalgicE #mecfs #ClimateAction #climatecrisis
Two Systems in Collapse
What illness can teach us about responding to climate change
jrehmeyer.substack.com
October 30, 2025 at 3:47 PM
How do we love what we can't save — a planet, or a body?
I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system...
#MyalgicE #mecfs #ClimateAction #climatecrisis
I wrote about the connections between severe ME and the climate crisis, and the discipline of continuing. jrehmeyer.substack.com/p/two-system...
#MyalgicE #mecfs #ClimateAction #climatecrisis
If I could go to a Halloween party, I would go as a doctor and repeatedly tell people "your labs are fine" "it's stress" "you're just deconditioned". I would whisper it in their ear.
#ChronicIllness #MedicalGaslighting
#ChronicIllness #MedicalGaslighting
October 30, 2025 at 2:25 PM
If I could go to a Halloween party, I would go as a doctor and repeatedly tell people "your labs are fine" "it's stress" "you're just deconditioned". I would whisper it in their ear.
#ChronicIllness #MedicalGaslighting
#ChronicIllness #MedicalGaslighting
October 27, 2025 at 7:08 PM
Reposted by Nele
BE-Wij helpen heel wat mensen met dergelijke aandoeningen, waarbij helaas geen genezing mogelijk is. Maar toch wordt er voortdurend belastinggeld gespendeerd aan controles bij deze mensen, die weten dat ze niet beter worden.
Nu gaan politici nog een stap verder, terwijl velen nu al in armoede leven…
Nu gaan politici nog een stap verder, terwijl velen nu al in armoede leven…
‘Frank Vandenbroucke had onderzoek naar #MEcvs beloofd. Nu wordt onze uitkering afgenomen.’
‘De reden waarom mensen ziek worden, doet niet ter zake, een zondebok voor de begrotingstekorten vinden is het enige wat telt.’
#LangdurigZiek #ChronischZiek
www.humo.be/meningen/lez...
‘De reden waarom mensen ziek worden, doet niet ter zake, een zondebok voor de begrotingstekorten vinden is het enige wat telt.’
#LangdurigZiek #ChronischZiek
www.humo.be/meningen/lez...
Lezersbrief: ‘Frank Vandenbroucke had onderzoek naar chronische vermoeidheid beloofd. Nu wordt onze uitkering afgenomen’
www.humo.be
October 14, 2025 at 2:43 PM
BE-Wij helpen heel wat mensen met dergelijke aandoeningen, waarbij helaas geen genezing mogelijk is. Maar toch wordt er voortdurend belastinggeld gespendeerd aan controles bij deze mensen, die weten dat ze niet beter worden.
Nu gaan politici nog een stap verder, terwijl velen nu al in armoede leven…
Nu gaan politici nog een stap verder, terwijl velen nu al in armoede leven…
Reposted by Nele
‘Frank Vandenbroucke had onderzoek naar #MEcvs beloofd. Nu wordt onze uitkering afgenomen.’
‘De reden waarom mensen ziek worden, doet niet ter zake, een zondebok voor de begrotingstekorten vinden is het enige wat telt.’
#LangdurigZiek #ChronischZiek
www.humo.be/meningen/lez...
‘De reden waarom mensen ziek worden, doet niet ter zake, een zondebok voor de begrotingstekorten vinden is het enige wat telt.’
#LangdurigZiek #ChronischZiek
www.humo.be/meningen/lez...
Lezersbrief: ‘Frank Vandenbroucke had onderzoek naar chronische vermoeidheid beloofd. Nu wordt onze uitkering afgenomen’
www.humo.be
October 11, 2025 at 8:14 AM
‘Frank Vandenbroucke had onderzoek naar #MEcvs beloofd. Nu wordt onze uitkering afgenomen.’
‘De reden waarom mensen ziek worden, doet niet ter zake, een zondebok voor de begrotingstekorten vinden is het enige wat telt.’
#LangdurigZiek #ChronischZiek
www.humo.be/meningen/lez...
‘De reden waarom mensen ziek worden, doet niet ter zake, een zondebok voor de begrotingstekorten vinden is het enige wat telt.’
#LangdurigZiek #ChronischZiek
www.humo.be/meningen/lez...
Reposted by Nele
‘Het idee dat #langdurigzieken een “gat in de begroting” zijn, is niet alleen onmenselijk, maar economisch absurd.’
‘Afgaand op de manier waarop het debat vandaag gevoerd wordt zullen vooral patiënten met verwaarloosde aandoeningen (zoals #MEcvs) de prijs betalen.
www.knack.be/nieuws/gezon...
‘Afgaand op de manier waarop het debat vandaag gevoerd wordt zullen vooral patiënten met verwaarloosde aandoeningen (zoals #MEcvs) de prijs betalen.
www.knack.be/nieuws/gezon...
'Langdurig zieken? Achter de kille statistieken bloeden levens langzaam leeg'
Het is bijna poëtisch hoe MR-voorzitter Georges-Louis Bouchez rustig suggereert dat er “5 miljard euro te rapen valt” bij de langdurige zieken, alsof
www.knack.be
October 9, 2025 at 7:55 PM
‘Het idee dat #langdurigzieken een “gat in de begroting” zijn, is niet alleen onmenselijk, maar economisch absurd.’
‘Afgaand op de manier waarop het debat vandaag gevoerd wordt zullen vooral patiënten met verwaarloosde aandoeningen (zoals #MEcvs) de prijs betalen.
www.knack.be/nieuws/gezon...
‘Afgaand op de manier waarop het debat vandaag gevoerd wordt zullen vooral patiënten met verwaarloosde aandoeningen (zoals #MEcvs) de prijs betalen.
www.knack.be/nieuws/gezon...
Reposted by Nele
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... 💔
To our great regret, we must inform you that Sanne has lost the lawsuit filed against three hospitals and will not receive parenteral nutrition... 💔
October 2, 2025 at 5:29 PM
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... 💔
To our great regret, we must inform you that Sanne has lost the lawsuit filed against three hospitals and will not receive parenteral nutrition... 💔
Reposted by Nele
Reposted by Nele
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...
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
September 16, 2025 at 7:26 PM
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...
meglobalchronicle.wordpress.com/2025/09/16/i...
www.facebook.com/groups/TheME...
Reposted by Nele
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
@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social
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...
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
September 16, 2025 at 7:32 PM
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
@georgemonbiot.bsky.social @swastrosarah.bsky.social @nelehelena.bsky.social @davetuller1.bsky.social @anilvanderzee.bsky.social @tomkindlon.bsky.social @janetdafoe.bsky.social
Reposted by Nele
Eén van de grootste satirische programma's van Vlaanderen, uitgezonden op nationale tv, plaatste een sketch waarin ze spotten met mensen met ME/cvs, één van de meest ernstige en misbegrepen chronische ziektes. Walgelijk en dit houdt verder mee het stigma in stand.
www.facebook.com/share/v/16K7...
www.facebook.com/share/v/16K7...
Redirecting...
www.facebook.com
September 13, 2025 at 11:05 AM
Eén van de grootste satirische programma's van Vlaanderen, uitgezonden op nationale tv, plaatste een sketch waarin ze spotten met mensen met ME/cvs, één van de meest ernstige en misbegrepen chronische ziektes. Walgelijk en dit houdt verder mee het stigma in stand.
www.facebook.com/share/v/16K7...
www.facebook.com/share/v/16K7...
Eén van de grootste satirische programma's van Vlaanderen, uitgezonden op nationale tv, plaatste een sketch waarin ze spotten met mensen met ME/cvs, één van de meest ernstige en misbegrepen chronische ziektes. Walgelijk en dit houdt verder mee het stigma in stand.
www.facebook.com/share/v/16K7...
www.facebook.com/share/v/16K7...
Redirecting...
www.facebook.com
September 13, 2025 at 11:05 AM
Eén van de grootste satirische programma's van Vlaanderen, uitgezonden op nationale tv, plaatste een sketch waarin ze spotten met mensen met ME/cvs, één van de meest ernstige en misbegrepen chronische ziektes. Walgelijk en dit houdt verder mee het stigma in stand.
www.facebook.com/share/v/16K7...
www.facebook.com/share/v/16K7...