An inquest hearing in the UK has heard how 27 year old Maeve Boothby-O'Neill died from complications relating to ME, following years of inadequate care from the National Health Service.
At least 25-thousand people live with ME (Myalgic Encephalomyelitis), also known as chronic fatigue syndrome in New Zealand.
The real number is likely higher, due to the nature of it being an 'invisible illness'.
Maeve's father Sean O'Neill is a Times correspondent. He is joined by leading researcher in ME/CFS in New Zealand, University of Otago Emeritus Professor Warren Tate.