INTRODUCTION TO SKEWED
byDirty Medicine The Handbook on Friday, 2 September 2011
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 over-whelming debility affecting his arms and legs, he felt permanently nauseous, had a vacillating temperature, severe headaches, sweat-ing, 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.’
Ean’s parents, Barbara and Rob Proctor, considered themselves an ordinary couple. When Ean’s illness began, Barbara, aged 46, was a full time housewife and 47-year-old Rob was an accountant. The Proctors had one other son, Gary, who was seven years older than Ean.
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.
Myalgic encephalomyelitis has been a disorder recognised by the medical profession internationally for over sixty years. It has been observed in both epidemic and sporadic forms with acknowledged similarities to other fatigue illnesses and the post-polio syndrome (PPS). There had been over sixty-three recorded outbreaks of ME since 1934, including pre-war epidemics in Wisconsin, America, in 1936, in Switzerland in 1937 and one in a Middlesex sanatorium, England, in 1939. In the immediate post-war years there was an epidemic in a Pennsylvania hospital in 1945 and two epidemics in Iceland. In the period from 1984 until 1992 there were eight recorded epidemic incidents in North America.
In 1956, the disorder then known as ‘atypical poliomyelitis’ was given the term benign myalgic encephalomyelitis (ME). Dr. Melvin Ramsay and colleagues defined three cardinal features of this ill-ness: muscle fatigue lasting several days after even minor physical effort, a remarkable variability of symptoms and physical signs even within separate episodes, and in many cases a relapsing and remitting course over months and years.
In 1959, the illness was considered of such consequence to the fledgling NHS that Donald Acheson carried out a major review. In 1962, the distinguished neurologist Lord Brain included ME in his standard textbook of neurology. In 1978, the Royal Society of Medicine concluded the foreword to a report of its symposium on the illness with the words, ‘it is hoped that as a result of the meeting, sufferers from this miserable illness will, in future, be more sym-pathetically managed.’ In 1981, what became known as the ‘Ram-say case’ description was published.
Dr. Melvin Ramsay was one of the first British physicians to take a committed interest in ME and to come into head-on collision with psychiatrists over its aetiology. Born in Lancashire in 1901, Ramsay epitomised the kind of courteous and caring physician who always treated his patients with respect. In 1947 he became Consul-tant in Infectious Diseases at the Royal Free Hospital. In July 1955 members of staff at the hospital went down with a new apparently infectious illness. By November of that year, the epidemic number-ed around 300 cases, nearly all of whom were Royal Free medical and nursing staff; the illness became temporarily known as the Royal Free disease. Following the outbreak at the Royal Free, Mel-vin Ramsay spent the remainder of his life until his death in 1990 fighting for the recognition of ME.
Almost twenty years after the outbreak at the Royal Free Hospital, two psychiatrists, McEvedy and Beard, wrote a paper claim-ing that there had been no illness at the hospital but an outbreak of mass hysteria.[i]
Neither McEvedy nor Beard ever saw, examined or interviewed any patients from the outbreak and used only carefully selected case-notes to support their claim that there were no physical signs of the illness.
At the time the Proctors began looking into ME, more clinical work was beginning on it. Over the next decade, ME would be proved to be a potentially severe, chronic and disabling disorder from which complete recovery was unlikely. Often starting with diarrhoea, that might continue chronically throughout the illness, sufferers experience persistent headaches, vertigo and dizziness.
The most striking feature of the illness was an incapacitating post-exercise muscle fatigue, recovery from which is delayed for at least 24 hours, together with extreme malaise, which is quite distinct from everyday ‘fatigue.’ All muscles are affected, including the heart.
People with ME may suffer permanent damage to skeletal or cardiac muscles, as well as to the liver, pancreas, endocrine glands and lymphoid tissues. Injury to the brain stem results in a disturb-ance of the production of cortisol required for stress control. [ii] Be-cause of damage to the hypothalamus, pituitary and adrenal glands there is not only muscle but joint pain. Pain is often extreme and intractable and many patients can walk only very short distances and require a wheelchair.[iii]
Sufferers sometimes have sudden attacks of breathlessness, problems with swallowing and voice production. Cognitive impair-ment includes difficulties with memory sequencing, processing speed, word searching and spatial organisation. Cycles of severe relapse, together with the evolution of further symptoms over time, are common in ME. Death occurs almost entirely from end-organ damage, mainly cardiac or pancreatic failure.[iv] Because of many doctors’ determined lack of understanding, suicide in ME patients is not uncommon.
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 Regis-trar 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,[v] later changing their name to HealthWatch. The group was generally in favour of ortho-dox 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.
Looking back, after their talk with Dr. Wessely, the Proctors reviewed previous comments about ‘school phobia’ and other psychological descriptions of his illness and for the first time be-came concerned that they had entered an area of medical conflict.
Later that day, it was suggested by a number of doctors at the NHND that Ean should be referred to the neighbouring Great Or-mond Street Hospital for Sick Children. At this point, two other psychiatrists, Dr. Lask and Dr. Turk became involved in Ean’s case. Dr. Lask was uncommitted to the ME diagnosis and wanted to initiate a psychiatric management programme of graded exercise together with family therapy. The doctors at the NHND wanted Ean admitted to a closed psychiatric ward.
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’s 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.’
Although the Proctors did not know it at the time, Dr. Wessely’s view was shared by a number of other psychiatric professionals and formed, to their mind, a consistent, useful and professional approach to an illness, the treatment of which had eluded doctors for many years.
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 con-dition, 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.
The Proctors were advised by social workers that they should obtain the services of a lawyer. It was their lawyer who then negotiated their right to see their son; he advised them that the hos-pital psychiatrist was the only person able to grant them visits. After a week, the Proctors were allowed to visit Ean for half an hour a day. His parents did not even know if Ean had been told why they had not been to see him over that traumatic week of separation.
At Noble’s Hospital the doctors began to conduct a series of experiments upon Ean without his parents’ knowledge or consent. Doctors ordered Ean to be put into a swimming pool without any swimming aids in order to shock him into behaving ‘normally’; un-able to move his arms, he sank to the bottom of the pool. On another occasion, Ean was taken out of the hospital to a local fun fair where, he was put onto the Ghost Train; his doctors believed he would be forced to cry out and so prove that he was able to speak. Despite Ean’s chronic condition, the doctors at Noble’s Hospital continued with a regime of forced exercise.
The doctors on the Isle of Man appeared determined to re-orientate Ean’s acceptance of his belief that he was ill. Everything possible was done to censor the communication between Ean and his parents, so that the Proctors did not again reinforce this belief. In desperation, the Proctors managed to locate a paediatrician on the mainland willing to travel to the Isle of Man. The paediatrician was insistent that Ean did have ME; however, it was October 1988 before Ean was allowed out of hospital to be treated by this phys-ician. Even then doctors and social workers, fearful that their methods, diagnosis and ‘treatment’ would be made public, insisted on going through the Court and pretended that they had located the independent doctor, to whose involvement the parents had raised objections.
A year after Ean’s release from hospital in the autumn of 1989, the Parliament of the Isle of Man, the Tynwald, appointed a Select Committee to address a Petition for Redress of Grievance, which had been entered by Mr. and Mrs. Proctor. In its final report to the Parliament, the Committee recorded that it was ‘beyond doubt that the Proctor family have suffered a painful, costly experience over a long period.’ They recognised that there were two views amongst doctors about ME and that one view had overwhelmed social workers who had proceeded with the care order.
The Committee recorded that they had obtained a great deal of written evidence about ME, particularly from the ME Association. One of the most disturbing things they had learned was that some experts suggested that if ME sufferers over-exerted themselves, their condition could be exacerbated, a view that flew directly in the face of the rehabilitation programme advised by doctors at Noble’s Hospital, the NHND and Great Ormond Street Hospital for Sick Children.
Of Mrs. Proctor and her parenting skills, which had, throughout the case, been brought into question, the Select Committee reported that ‘Mrs. Proctor became distressed because the doctors and consult-ants on the Isle of Man and many in England did not seem to accept that Ean was suffering from an illness in the ordinary sense but said that he had psychological problems.’ In the opinion of the Committee, Mrs. Proctor was, however, an extremely caring mother whom they found to be intelligent, articulate and equipped with a good memory. The Committee commented that, though his mother might have been protective towards Ean, this was surely her entitlement.
The Tynwald report agreed unanimously that the case con-ference held to discuss Ean Proctor’s case, in the absence of the Proctors and without hearing a balancing medical view of ME, had been inappropriate and not in the best interests of Ean: ‘there should not have been an application for a Care Order without a visit by the social worker to the Proctors,’ they concluded.
Unfortunately for the Proctors and for other sufferers of ME, the Tynwald Select Committee decided that any compensation award should be decided by another inquiry. To this end, the McManus Inquiry, headed by a lawyer and composed of a paediatrician and a retired Director of Social Services, sat in 1992. The McManus Inquiry found that the Proctors were not entitled to any compensation because Mr. and Mrs. Proctor had brought everything upon them-selves and were themselves responsible for their son’s illness.
The findings of the McManus Inquiry were a substantial victory for the psychiatric lobby. The Inquiry’s decision not to recognise ME and grant compensation for the traumatic manner in which the Proctors were treated was the first of concentric ripples which would lap through the courts whenever this illness was discussed over the next decade. The McManus finding, in opposition to the Tynwald Select Committee Report, inevitably affected any claims against the authorities for those who found their children taken from them for psychiatric treatment.
Over the next decade, Dr. Simon Wessely became a world expert on ME, its psychiatric origins, and its sibling illnesses that were to be relabelled in their entirety as Chronic Fatigue Syndrome (CFS). Publicly he distanced himself from the interventionist approach, which had been advocated in the Proctor case. By the end of the century, however, the suggestion that parents were abusing their children by enforcing false illness beliefs on them, was to be used increasingly as a legal argument by those seeking care of children.
Ean’s case was to cost the Proctors dear. They were forced to move home because of cruel behaviour from neighbours who made their life hell. Believing that Ean’s illness was psychiatric, they gathered from the lack of facts rumoured around the village and the ‘evidence’ that Ean was forcibly taken into care, that the Proctors were abusing him. Neighbours chanted outside the Proctors’ home, they pushed stones through the Proctors’ letterbox and smeared dog dirt onto the Proctors’ car door handles.
When Ean’s illness began Barbara’s hair was brown streaked with grey; two years later, by the time the worst of the nightmare was over, her hair was completely white. Rob Proctor, who had been working in the aerospace industry, was made redundant and was unemployed for three and a half years, as a consequence of the time he took off to accompany his son on his search for treatment. Their son’s illness just about bankrupted the Proctors.
[i] Royal Free Epidemic of 1955: A Reconsideration. Colin P. McEvedy, A.W. Beard. BMJ 1970:1:7-11.
[ii] Former President of the UK ME Association Dr. E. Dowsett in her Presentation to the All Party Parliamentary Group on ME, January 2001, entitled ‘The Late Effects of ME: can they be distinguished from the Post-polio syndrome?’ Also in Dr. John Richardson Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Other Organ Pathologies, 2001, The Haworth Press Inc, New York.
[iii] Prof. Paul Cheney in his Testimony before the US FDA Scientific Advisory Committee, 18th February 1993. Also a major Report by the charity Action for ME found that 77% of sufferers experienced severe pain. Severely Neglected: ME in the UK. Report from Action for ME. March 2001.
[iv] Dowsett, ibid.
[v] This lobby group, financed and organised in part by pharmaceutical corporations, ran a consistent campaign against ME and those who suffered from it, as they did against food allergy which again they insisted was a mental aberation of the sufferer. The group was taken over by Sense About Science — the Corporate lobby organisation masquerading as a charity — in the late 1990s.