Michiel

murtoz.bsky.social

26 September 2026 19:15

And they do nothing what so fucking ever for people like Karen Gordon who's effectively imprisoned by the NHS and threatened with being discharged without care for not being able to do a 200 mile round trip to another hospital that doesn't believe in ME.

Michiel

murtoz.bsky.social

26 September 2026 19:15

Recovery anecdotes are HARMFUL for pwME. Fact is that around 5% of us end up in remission and even then still have to be careful. These narratives shift the blame to sick people for not recovering, instead of to govt and health care systems for systemic neglect and abuse.

Sarah, vaguely

jarmara.bsky.social

26 September 2026 19:11

Gave up seeking treatment years ago. It's mild enough for me that if I'm careful, I can live fairly normally. Ie, I can work. Outside of work, I'm mostly protecting my energy for my next shift.

Deborah Talbot

writergeek.bsky.social

26 September 2026 19:10

Apart from the attack on disability benefits, they aren't designed for fluctuating, complex conditions at all. I say this as someone with lupus - relatively established as a disease with a treatment pathway - who doesn't get benefits & the NHS support is limited.

Deborah Talbot

writergeek.bsky.social

26 September 2026 19:10

Doctors don't like illnesses they don't understand, are heavily influenced by past established practices, are working with limited resources and are told not to refer if possible. LC centres have been disbanded. The government doesn't want to think about Covid at all.