Nope. That's not good enough. I want to be free right now. Not tommorrow. Not when you realize my life matters. I want to be outside. Free. Running around sweating and working and laughing and crying and creating a life for myself and my loved ones. Now. #MECFS #LongCovid

Deze week staat er een stuk in De Groene waarvan ik hoop dat niet alleen mensen die het rechtstreeks aangaat, maar ook heel veel anderen gaan lezen. Het gaat over de strijd van patiënten met long covid én ME/CVS om erkenning en hulp. groene.nl/artikel/waarom…

Found out today that a lady in a Bristol hospital who had M.E, EDS and MCAS passed away this week from starvation. How tf is that possible in this day and age to allow that to happen? To be refused TPN because the ‘infection risk is too dangerous’ … more dangerous than? Death?

S H A R O N died of starvation in hospital bc of doctors refusal to administer TPN D A V I D found dead in his flat after DWP removed his PIP L E N A "no palliative care, [...] but hey you can starve yourself to death if you want to." R.I.P. fellow pwME 💔 #MEkills

I made a new video about the status of my health. I’m finally talking and walking! And thank you to my friend Tobias for letting me share his ME/CFS story, too. youtu.be/vqeIeIcDHD0

When one clinician takes an incredibly brave step and says, “I now have Long COVID and I was wrong about these illnesses. I am ashamed,” it can create waves throughout the entire profession and broader society. It has a humbling effect and creates immense goodwill.

I am fully bed ridden in crippling pain and can’t even afford my meds or a roof over my head without support because of this. If I have to go back to hospital I’ll end it I can’t handle another round of that Give a little coming soon, PayPal is [email protected]

AloneLonghaulLady is facing a risk that no #LongCovid long hauler should face - the risk of eviction and homelessness. Rent & wifi are due today. Late rent fees are piling. She also has crucial medical appt in 1 hour. Please uplift her fundraiser so that her needs are met.

A must watch interview‼️‼️ Shows how deeply informed you must be to push back against a medical system still promoting outdated, harmful treatments for #kidswithME & the amount of intimation you can get. Don’t miss it — TY Sander Zurhake & davidtuller! youtu.be/WFxTpuGuiI4?si… .