From The Sydney Morning Herald.
Alison Hunter used to say she had lemonade in her legs and “shimlers” in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her.
Vocabulary was still an issue when Alison died. Despite a decade of crippling physical symptoms and abnormal pathology and neurology tests, medical science never came up with anything more tangible than chronic fatigue syndrome (CFS) to describe her illness.
Her mother Christine nursed her daughter round the clock until she died in her arms, at home, six years ago at the age of 19.
With its mysteriousness and suggestion of psychological upset and malingering, she believes the CFS tag gave many doctors licence to ignore Alison’s decline and trivialise her distress.
To read the rest of this story, click on the link below: