The book by Martin Walker
SKEWED is a detailed investigation into the psychiatric diagnosis of a range of illnesses which some have suggested are actually caused by chemicals. The book traces the chemical companies argument against their products causing illnesses and it tracks the growth of the theory, promoted by them, that individuals who report symptoms of chemically induced ill health have personality disorders. The book asks how psychiatric theories of 'unexplained illness' have managed to gain ascendancy and shape the diagnosis, research funding and public perception of these illnesses, particularly in Britain.
From the Preface...
Some people discover illnesses that are then named after them; these illnesses can belong to their finders in perpetuity. Others have illnesses inhabiting their bodies; they live with them, learning to love and to hate them; these people have custody of their illnesses until they are cured or they die. Pharmaceutical companies claim rights over illnesses for the period of drug patents; for this time these illnesses, their definition, diagnosis and treatment literally belong to the pharmaceutical company - they are only addressed, in the mainstream, by that company's products and doctors loyal to that company. Still others lay claim to illnesses and areas of pathology in order to enrich themselves, to advance their careers or simply to become experts.
This book tells how a small group of clinicians and academic psychiatrists have attempted over the last two decades to gain control of a number of medically unexplained illnesses, some clearly linked to chemical exposure and including Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), a name given in 1988 to a range of fatigue illnesses of different origins. Readers looking for detailed explanations of these illnesses will be disappointed with this book, which is, as its wordy subtitle attests, not about unexplained illnesses but the diagnostic approach of those psychiatrists who insist that the illnesses are psychogenic in origin and do not need biomedical explanations.
The book is written almost completely on behalf of sufferers and carers of those with unexplained illnesses. Its intention overall is to describe the social, professional and cultural factors affecting the construct of illnesses which are not recognized, at least by a small and powerful group of doctors, as having physical origins. The book presents the case for those sufferers, who from the point of their first psychiatric diagnosis, despite protestations, are left without effective help by much of the medical profession, social welfare agencies and most private insurance companies.
The conflict generated by the new power relations which lie increasingly submerged between victims of illness and medical scientists and academics is at its most raw in a number of what might be called 'emerging illnesses,' sometimes related to industrial development or the State's actions, where clinicians and researchers have no immediate aetiological answers or ready cures. Such disorders include some forms of allergy, chemically induced illnesses, Multiple Chemical Sensitivity (MCS), Gulf War Syndrome (GWS), Organophosphate (OP) poisoning and a small number of illnesses, the causes of which are presently medically unexplained, like Myalgic Encephalomyelitis (ME) and a variety of chronic fatigue conditions, collectively referred to as Chronic Fatigue Syndrome (CFS).
This book traces the history, ideas and actions of those academics, physicians, mainly psychiatrists who have spent part of their careers denying the physical nature of a number of illnesses, and offering instead the diagnosis of mental illness.
From the Introduction...
In September 1986, Ean Proctor, an 11 year-old boy living on the Isle of Man, became ill with a flu-like illness from which he did not make the anticipated recovery. Ean began to complain of an overwhelming debility affecting his arms and legs, he felt permanently nauseous, had a vacillating temperature, severe headaches, sweating, mouth ulcers and swollen glands. He began to have difficulty in controlling his speech and developed a mental fatigue which left him struggling to finish a sentence and unable to remember things. By January 1987, with the illness persisting, he had begun to drag one leg and lose his sense of balance. Over the next ten months Ean Proctor attended the Royal Liverpool Children's Hospital, where he was diagnosed with Post Viral Fatigue Syndrome, and the local Noble's Hospital, where it was suggested that he might be suffering from 'school phobia.'
When the Proctors asked if Ean could be referred to a research Professor on the mainland, they were informed that they would be wasting NHS money. The Proctors offered to pay themselves but were still refused. Eventually, however, it was suggested that the Proctors seek help in London at the National Hospital for Nervous Diseases (NHND). Here Ean was seen by Dr. Morgan-Hughes, a consultant neurologist, who after an hour-long examination diagnosed severe myalgic encephalomyelitis, the illness known by its initials ME.
The Proctors knew nothing about ME but were glad to have a diagnosis. Morgan-Hughes told them that their son should be cared for at home and that school would be out of the question for the foreseeable future. By the end of 1987, Ean was partially paralysed and had lost his voice; he would be unable to speak again for almost three years. During the first year of coping with Ean's illness, the Proctors learned more about ME from campaigners, independent research and from their consultant.
All the symptoms which Ean Proctor suffered had previously been recorded as assailing patients who had been diagnosed with ME. In April 1988 Ean and his parents flew again to London for another appointment at the NHND. On this visit the Senior Registrar in Psychiatry, Dr. Simon Wessely, took an interest in Ean's case.
By 1988, when he first saw Ean Proctor, Dr. Wessely had met up with a number of medical sceptics based in Britain and America. In Britain this informal group officially launched themselves in 1988 as the Campaign Against Health Fraud, later changing their name to HealthWatch. The group was generally in favour of orthodox medicine and pharmaceutical intervention, while opposed to what they considered fashionable but unevidenced illnesses or con-cepts of environmental illness and their 'alternative' treatments. Dr. Wessely's main contribution to this group, over the next six or seven years, was to be his argument that ME was not an organic illness but one which originated in the mind.
On the day of the Proctor's second visit to the NHND, Dr. Wessely dropped into the consulting room and asked the Proctors if they would help with his research into ME. Even at this early stage, Dr. Wessely, who later suggested that Ean's inability to speak was elective mutism and that he had a 'primary psychological illness', seemed convinced that children did not suffer from ME.
It became clear to the Proctors that some doctors did not accept ME as a physical illness. Shocked by this conflict among experts, the Proctors told the doctors they could neither afford the time off work nor the money to fly backward and forward to the hospital in London each week. The doctors seemed adamant that unless the Proctors allowed psychiatrists to assess their relationship with Ean he was unlikely to get better. On their return to the Isle of Man, the Proctors dropped a letter in at their GP telling him what had happened and asking him to contact them. Two weeks went by before the GP informed them that he could not accept the original diagnosis of ME. Before anything else was done, he suggested, they should all await a report from Great Ormond Street. Mr. and Mrs. Proctor then sought help from a medical practitioner who was also a homoeopath.
Unbeknown to the Proctors as they sought their own support and treatments, their local Social Services team was acting upon an assessment prepared by doctors at the NHND and Great Ormond Street for the Proctor's GP. This report included a statement from Dr. Wessely stating his professional opinion that Ean's apparent illness, appeared to be 'out of all proportion to the original cause' and that his parents were 'over-involved in his care.' In a later letter of June 1988, to the principal social worker in Ean's case, Dr. Wessely stated: 'I feel that Ean needs a long period of rehabilitation, part of which will involve very skilled management of separation from his parents.'
Early in June 1988, social workers on the Isle of Man met with doctors and Child Care Department workers from the Island. Of the two doctors present at this and subsequent meetings, only one had seen Ean. The report from Great Ormond Street Hospital informed the participants that Ean was in a life or death situation and had already suffered serious deterioration. The inference of both the report from Great Ormond Street and the doctors' evidence at the meeting was that Ean's parents were to be blamed for Ean's condition, having imposed 'false illness beliefs' upon him. A decision was taken to obtain a Care Order, which would enable Social Services to take Ean from his parents and place him in the care of the State.
The following day social workers, with an order from the court and evidence provided by London doctors, accompanied by police officers, called without prior arrangement at the Proctors' home. Under threat of force they took Ean to Noble's Hospital. Watching from their front door as social workers took their sick child, Mr. and Mrs. Proctor had no way of knowing when or under what circumstances they would see him again.