Lost Voices is published by Invest in ME, a British charity which concentrates on promoting research into the causes of, and a possible cure for, the debilitating neurological disease, myalgic encephalomyelitis (ME); they have organised conferences in London addressed by the major scientists involved in such research, mostly from the USA. I ordered the book from the charity on Monday this week and got it in the post on Wednesday, so it must have been dispatched on Monday afternoon, so they look like a pretty efficient organisation in that regard at least. You can order it here.
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, of chemical sensitivities in which a patient’s home “poisons [him] badly each day”, of being able to sense a doctor’s fear at seeing them in a terrible crisis situation and nearly starving, of getting into a bridesmaid’s dress for photos at home then remaining there while the rest of the family go to church, and of “holidays” in the village half a mile from home, looking at the goats through dark glasses in a reclining wheelchair.
As for the relatives, we read of the father whose wife is dedicated to caring for their severely-ill daughter and so he no longer sees much of either; we see the woman who has kept a room in her house prepared for five years in case her sister is well enough to come and visit; the heartbreak of seeing a girl transform from playing badminton for her county and managing a local football team to being bedridden and unable to bear light or smells; the brother who loses the protection of his big sister and the sick (not with ME) Nan who has to move into a nursing home so her daughter can care for her own sick (with ME) daughter. From both groups, we hear stories of doctors who refused to accept that the illness is physical and of struggling to obtain benefits. There are pictures of the patients and their family both during the illness and in happier times; the patients, as might be expected, are often pictured in dark conditions, lying down or in a wheelchair, often with their eye-masks, pills and tubes, often with the suffering clearly written on their faces. It’s very powerful.
Something which is missing is any account of the ME-related child abuse scandals from the 1990s: there are a number of stories of children being shut in locked psychiatric wards (Georgie Shelton), taken from their families in dawn raids (Ean Proctor) and humiliated and subjected to terrible cruelty in hospital (Proctor again, Lynn Gilderdale), and although Jane Colby mentions in her essay at the end of the book that families had been subjected to child protection proceedings and accused of having Munchausen’s syndrome by Proxy while their children had ME (i.e. they were accused of fabricating or exacerbating their children’s symptoms), a personal story of this kind of thing would have added some power to this book. However, the story of Sophia Mirza, who was seized from her home and sectioned (forcibly taken to a psychiatric hospital) which led to a relapse in her illness from which she eventually died, is told by her sister Roisin.
One sour note is struck in one of the carers’ stories, in which someone bemoans “the rotten influence of the tens of thousands who are simply fatigued. They do not have ME and they do so much damage to the credibility of our cause”. It is unfair to blame these people as they did not cause the confusion between ME and chronic fatigue; it was various scientists, psychiatrists and others with vested interests, and the media who played along with them and peddled the “yuppie flu” myth and used “fatigue” and “chronic fatigue” as synonyms for ME (indeed, even those who cling to the CFS terminology insist that CFS and “chronic fatigue” are distinct). Some of the conditions which do cause fatigue are serious and even life-threatening, and others are distressing and frightening. Many of these people are ill, even if not with ME.
There is a shortage of printed material on ME, although there is plenty of material these days on the internet, and much of what is available is either difficult to obtain or of poor quality (Jodi Bassett has the most comprehensive ME book review collection out there). This is not a self-help book but a record of the lived experience of having ME and living with someone who has it, and is probably the only current book which concentrates on the ME experience and is therefore by definition the best, but they have done a very good job of it: it’s a very powerful and hard-hitting book. If you have an interest in this subject, I strongly recommend it.
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