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Long Covid Advocacy's avatar

👏👏👏 Great to see your first Substack out. People with #ME and #severeME need commissioned, safe care within the NHS. This is an excellent campaign to work towards this 💙

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Philip Prydderch's avatar

Hello Karen & Emma, thank you for creating #ThereForME. We really do need the NHS to make major improvements to its care. Whilst we all know the NHS is in a bad place at the moment, under-resourced and under-funded, that should not be an excuse for not implementing the NICE Guidelines, and training Drs & Nurses appropriately in ME/CFS. There’s no excuse for treating Severe ME patients (or mistreating them) in the way that tragically happened to Maeve.

The extremely frustrating thing is - nothing has been learned, and many people with ME are still treated that way in hospital (such as Mille, Karen & Carla).

I’ve got ME/CFS (Moderate/Severe), and I dread the thought of becoming so unwell I need to be in hospital. I used to trust that I would get good and appropriate care in the NHS - but since becoming ill, I have huge mistrust issues with it. Which is terrible, as I do believe in the principle of the NHS.

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