A recovering ME/CFS sufferer, I read this book as research for a book I intend to write myself. It proved very illuminating in so many ways. There are differing degrees of this pernicious and horribly life-limiting condition and most of them are represented within the pages of this book.
Consisting of letters written by sufferers, carers, friends, family members, medical professionals and recoverers, it spans the wide panorama of experiences well. There is bitterness, hope, wonder, anguish, love, misery, pain, humour, anger, frustration and joy within these pages. There are examples of frustration with the ignorance of both the medical profession and the general public expressed effectively by both sufferers and carers.
Some of these accounts will make you cry, others will have you smiling, yet others will make you feel like shouting out loud, swearing with the frustration of it all. It’s an emotional roller-coaster, and I make no apology for that cliché, as this condition is one of difficult slow climbs followed by devastating drops.
If you’re s sufferer, carer, friend or family of someone with the condition, but, most of all, if you’re a medical professional, you should read this. It will educate, and hopefully squash those damaging and ignorant prejudices that blight the lives of so many who battle daily with this condition.
Well written and thoughtfully compiled, it contains the words of people who know what it’s like, who have lived with or are living with this devastating complaint and its multiple consequences. And, if you’re just an interested member of the public, wishing to expand your awareness, this is definitely for you. You’ll see that I’ve used the word ‘frustration’ repeatedly in this review: it’s a word that sums up one of the most commonly experienced emotions of sufferers and their carers. Consider: this is a condition that is generally experienced by those who are most active in society. Imagine, for a moment, the consequences of having such activity suddenly removed, and you might start to appreciate why frustration is such a universal experience.
I’d like to see everyone read this book. I know that won’t happen, but I hope that many will make the effort. You’ll find it worth your while.