👇 Kan iemand Nele medisch advies geven? Haar huisarts kan haar niet verder helpen, dan met gebruikelijke medicatie die niet helpt www.instagram.com/nele_helena?...,

We've finally managed to post an update after two months. Delay partly due to strong hints that too much honesty would affect her care; and partly because Sam has had to push way too much to try and protect Savannah from their BS. But it's not all bad news! #SaveSavannah #SevereMErgency #ME/CFS

Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce

Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital

gofundme.com

#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 België vasthouden aan een achterhaald beleid. Patiënten betalen daarvoor een zware prijs." Mijn opiniestuk @knack.be⬇️ #LangdurigZieken #PAIS www.knack.be/opinie/me-cv...

Please help me escape abuse. Anything helps. Info in Chuffed link. 💸Crowdfund: www.chuffed.org/project/1619... ☕️BMaC: buymeacoffee.com/Halcionandon 🎁Amazon: www.amazon.com.au/hz/wishlist/ls/1B9A74NSROTQZ ᯓ➤Beem: Halcionandon Please share. #MutualAidAustralia #MutualAid #HelpSky #MutualAidMonday

### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out!

🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!

chuffed.org

2/ "Belangrijke factoren zijn geïdentificeerd, 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...

POTS, ME/CFS and Long COVID as neuroimmune disorders | ITT

Postural orthostatic tachycardia syndrome, myalgic encephalomyelitis/chronic fatigue syndrome and Long COVID are heterogeneous disorders with overlapping terms.

dovepress.com

NEW 🚨 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/...

London hospital STILL starving severe ME patient, Savannah — bias medical approach to blame

A South London hospital is still putting severe ME patient Savannah's life at risk and a clinician who psychologises ME might be why.

thecanary.co

Two years today since my friend @dutchlauren.bsky.social passed away 🕯💙 Going to eat some nuggets (which she loved) and will try to watch one of her favorite movies. #severeME #reMEmberLauren

Two years today since my friend @dutchlauren.bsky.social passed away 🕯💙 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/...

An NHS hospital is starving a severe ME patient and 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

thecanary.co

👇Wie wil meehelpen met deze anonieme bevraging rond het leven met een PAIS-ziekte. Het gaat o.a. om #MEcvs, #lyme, #longCovid, #Qkoorts ,... Delen mag 🍀🌺 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-patiënten 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-...

‘De onzichtbaarste zieken waren niet in staat hun stem te laten horen tijdens de Warmste Week’

humo.be

Dubbel gevoel bij De Warmste Week. Veel mooie betekenisvolle acties omtrent het thema onzichtbaar ziek, maar ook dit ⬇️

Ramses Temmerman@ramsestemmerman.bsky.social · 10mo ago

"Ernstig zieke ME/CVS-patiënten 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-...

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

Jason Murphy @jasemurphy.bsky.social · 12mo ago

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.

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...

Tijdschrift voor Psychiatrie

Uitgave van de Stichting Tijdschrift voor Psychiatrie waarin participeren de Nederlandse Vereniging voor Psychiatrie en de Vlaamse Vereniging voor Psychiatrie.

tijdschriftvoorpsychiatrie.nl

@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…

I'm so excited about Zohran Mamdani and I'm not even American 🥹

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.

Marco Foster@marcofoster.bsky.social · 2y ago

New York assemblyman Zohran Mamdani confronts Border Czar Tom Homan today in Albany 👇🏻

Open brief aan onze politici. Delen is lief!

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 🙏

Open Medicine Foundation (OMF)@openmedf.bsky.social · 12mo ago

🌟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

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...

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...

volkskrant.nl

"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.’

medscape.com

Last night I dreamed that I was at a party, french kissing a random dude. And god I really miss those days. #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.

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

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

Two Systems in Collapse

What illness can teach us about responding to climate change

jrehmeyer.substack.com

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

Pro tip: don’t read your medical file right before bedtime 😭 #MedicalGaslighting