Posted by Indigo Jo:
The book consists of personal stories and poetry by sufferers of ME (mostly severe ME) and their parents and carers, as well as family photos and pictures of the scenery around the sufferers’ homes (all in the UK).
Anyone familiar with the online ME scene will recognise quite a few of the names: Greg and Linda Crowhurst, Zoe Williams and her mother Pat, “Dr Speedy”, Emily Collingridge, Sophia Mirza and Jane Colby are all featured prominently.
Lynn Gilderdale’s story is not there (although she is mentioned in the dedication at the beginning there may be a reference to her in one piece) but there are quite a number of similarly, if less extreme, heartbreaking stories of young people, usually women, whose life has been dominated by this illness since their early teens or even earlier, who miss out on everything their peers do, from going to school or college to walks in the park to getting married and spend most of their time in a darkened room or looking out of the window with dark glasses on.
From the patients, there are tales of “pillars of pain” and worlds plunged into silence and darkness, ... Read more>>