By Claudia Tanner, in iNews.
The mother of Merryn Crofts believes attitudes about the disease haven’t changed since her daughter’s death two years ago.
Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday.
As a mother, she’d felt helpless as she watched Merryn’s agonising six-year fight with severe myalgic encephalomyelitis, known as ME.
The disease had left her bed-bound for the last three years and forced to lie permanently in the dark in her bedroom with ear plugs in – hyper-sensitivity to noise, sound and touch caused her agony.
Problems swallowing and with her stomach meant that her weight plummeted to just five-and-a-half stone, and she needed to be tube fed.
Last year, Merryn, became only the second person in the UK to have ME – also known as chronic fatigue syndrome – listed on a death certificate.
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