**Trigger Warning: Upsetting content**
BBC News
Extracts
Maeve Boothby-O'Neill's final days were harrowing. The 27-year-old was confined to bed all day, unable to chew food and no longer able to sit up – she was severely ill with myalgic encephalomyelitis, or ME, and as a consequence severely malnourished.
Her death has prompted warnings from a coroner, that other people could die in the same way unless things change. Care for people with the severest ME is “non-existent”, the coroner concluded.
Maeve died at home after being admitted to hospital on three separate occasions during the months before her death.
This tragedy has highlighted the plight of people like her who feel they have nowhere to turn.
Nicole, 52, has had severe ME, also known as chronic fatigue syndrome, for six years. She spends most of her time in bed with the light off and black-out curtains on the windows.
“My day results in me having my eyes covered laying in my bed doing absolutely nothing,” she says.
“The light causes really severe headaches, and it can make me vomit,” she adds. Sounds give her nausea too.
Nicole's 30-year-old daughter has given up work to care for her mum – something Nicole finds heart-breaking, though her daughter does it readily.
Nicole spoke to us after we asked for people's experiences of ME care on the ME Association Facebook page.