Last September Victoria Webster, an 18 year old who was diagnosed with ME and had been ill for most of her life, died. “Victoria had a very severe form of ME which made her hypersensitive to light and noise, to the point that she was bedbound and had to have her bedroom completely in the dark and the windows sound-proofed.” There has recently been an inquest into her death which remained largely unnoticed until then. A newspaper article is here