Mooi!
03.03.2026 14:40 β π 1 π 0 π¬ 0 π 0Mooi!
03.03.2026 14:40 β π 1 π 0 π¬ 0 π 0
#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed.
Please share widely
#SaveSavannah #SevereMErgency
@tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social
"Terwijl Duitsland #MEcvs en #LongCovid erkent als een van de grote gezondheidsuitdagingen van deze eeuw, blijft BelgiΓ« vasthouden aan een achterhaald beleid. PatiΓ«nten betalen daarvoor een zware prijs."
Mijn opiniestuk @knack.beβ¬οΈ
#LangdurigZieken #PAIS
www.knack.be/opinie/me-cv...
Goed geschreven!
12.02.2026 15:23 β π 3 π 0 π¬ 1 π 0
Please help me escape abuse.
Anything helps.
Info in Chuffed link.
πΈCrowdfund: www.chuffed.org/project/1619...
βοΈBMaC: buymeacoffee.com/Halcionandon
πAmazon: www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ
α―β€Beem: Halcionandon
Please share.
#MutualAidAustralia
#MutualAid #HelpSky #MutualAidMonday
2/ "Belangrijke factoren zijn geΓ―dentificeerd, zoals autonome disfunctie, immuundysregulatie, auto-immuniteit, mitochondriale disfunctie, cerebrale hypoperfusie en neuro-inflammatie. Daarom moeten deze aandoeningen worden beschouwd als neuro-immuunziekten."
www.dovepress.com/postural-ort...
NEW π¨ A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.
www.thecanary.co/uk/analysis/...
Haha activeren of opgegeten worden
31.01.2026 10:53 β π 1 π 0 π¬ 0 π 0π
31.01.2026 10:41 β π 0 π 0 π¬ 1 π 0Omg hahaha gelukkig hebben ze ons tijdens de warmste week niet gegeten π
31.01.2026 10:31 β π 0 π 0 π¬ 1 π 0
Two years today since my friend @dutchlauren.bsky.social passed away π―π
Going to eat some nuggets (which she loved) and will try to watch one of her favorite movies.
#severeME
#reMEmberLauren
π
27.01.2026 10:05 β π 0 π 0 π¬ 0 π 0
Two years today since my friend @dutchlauren.bsky.social passed away π―π
Going to eat some nuggets (which she loved) and will try to watch one of her favorite movies.
#severeME
#reMEmberLauren
URGENT:
An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...
πWie wil meehelpen met deze anonieme bevraging rond het leven met een PAIS-ziekte.
Het gaat o.a. om #MEcvs, #lyme, #longCovid, #Qkoorts ,...
Delen mag ππΊ
docs.google.com/forms/d/e/1F...
Ps je naam verschijnt automatisch maar die is voor niemand anders zichtbaar dan voor jezelf
"Ernstig zieke ME/CVS-patiΓ«nten liggen uitgeput in een donkere kamer omdat elke zintuiglijke prikkel hen nog zieker maakt."
"De Belgische regering straft liever de allerzwaksten in plaats van te luisteren naar hun verzuchtingen."
#MEcvs #LongCovid
#OnzichtbaarZiek #DWW
www.humo.be/meningen/de-...
Dubbel gevoel bij De Warmste Week. Veel mooie betekenisvolle acties omtrent het thema onzichtbaar ziek, maar ook dit β¬οΈ
27.12.2025 09:46 β π 6 π 0 π¬ 0 π 0Nog een late gelukkige verjaardag! β‘
25.11.2025 18:29 β π 1 π 0 π¬ 1 π 0
Autoimmunity, here we come at last! πππͺπͺ
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
Iβm also not in favor of psychiatrists treating POTS as it isn't a psychiatric illness. It's a neurological syndrome and it needs the right care. Although knowledge is often missing there too.
07.11.2025 16:52 β π 3 π 0 π¬ 0 π 0
It also lacks mentioning how severe POTS can be and that not everyone responds to treatment.
But it explains many important things pretty well and every doctor should read this.
We need more articles like this!
Autoimmune illnesses and small fiber neuropathy aren't mentioned as comorbidities. But I think everyone with POTS or orthostatic intolarance should be screened for this.
And it's also important that doctors recognize orthostatic intolerance, even when the POTS criteria aren't met.
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...
@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 βworking peopleβ, βworking classβ
They may critique commodity fetishism, but can end up with a sort of labour fetishismβ¦
Yes it is!
05.11.2025 10:01 β π 2 π 0 π¬ 0 π 0Ah die zouden indien nodig ook aan huis moeten kunnen hoor. Maar ik snap dat je liever gaat voor deze combi aan dingen. Succes π
05.11.2025 09:59 β π 0 π 0 π¬ 1 π 0
Gekend probleem hier. We hebben dringend betere online en telefonische opties nodig in BelgiΓ«.
Hopelijk voel je je snel weer ietsje beter β‘
I'm so excited about Zohran Mamdani and I'm not even American π₯Ή
05.11.2025 09:18 β π 5 π 0 π¬ 1 π 0
Mamdani stood up to Tom Homan.
Heβs 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.
Itβs a huge friggin win.