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One needs to be slow to form convictions, but once formed they must be defended against the heaviest odds.
Dirty Medicine embodies investigative reporting at its best. Links for those without Flash
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SKEWED Nowadays many people are becoming ill from 'hidden' causes such as air pollution, pesticides in food, prescription drugs, vaccinations, radiation from mobile phones and computers. They become tired and weak. This book deals with the fact that these people, who are diagnosed with ME or Chronic Fatigue Syndrome, are frequently referred to psychiatrists. Since no concrete physical diagnosis can be found, these sufferers are told that 'it is all in their minds', that it's psychosomatic.
Since the publication of Dirty Medicine, I have often been consulted by campaigners who have been attacked by members or associates of ‘quackbuster’ organisations. In the year 2000, I was consulted by two campaigners on ME. Both individuals had been severely attacked by a doctor adviser to one of the ME groups. I advised to the best of my ability and then got drawn into writing SKEWED, to represent the case of those who had become victims of the psychiatric aetiology of ME and CFS. A Taster Introduction
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 Hos-pital, 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.4 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.5 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.6 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.7 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. 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 arran gement 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 In-quiry 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. 1 Royal Free Epidemic of 1955: A Reconsideration. Colin P. McEvedy, A.W. Beard. BMJ 1970:1:7-11. 2 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. 3 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.
SKEWED was not much reviewed, although some very positive things were said about it. It often seems to me that contemporary campaigns, especially in relation to medicine, are very lazy. These campaigns should be seriously concerned about developing an overview of the literature which is available and should be consistently writing about statements and texts in support of their campaigns. Instead of this, the internet and the plethera of information available, has lowered the standard of debate about texts and written arguments. All too often groups contact me and ask if I could provide a few lines about one of my books, which they haven’t read and which they cannot spare the energy to write about themselves. Robert Allen, author, campaigner and a founder member of the exceptional e-journal BlUE, did take the trouble to read and write seriously about SKEWED. Not only that, but he carefully side stepped the in fighting about ME and CFS, to give a clear view of what I thought was one of the central themes of my book, that of chemical companies and their avoidance of responsibility for chemically induced illness. _______________________________________________________ A Review of SKEWED by Robert Alan Skewed is an essential text that needs to be available to everyone who goes to college with the ideal in their head that they want to work in the chemical industry or practice medicine. It also needs to be in every major bookstore, and the author needs to appear on tv, radio and in print telling his story. For too long industry and its apologists have dominated the media with their cynicism and their lies.
Fifty four year old Val Newsome knew that "the terrible pain down the left hand side" of her body had something to do with the swarf fire which had begun on Southampton's Northam Bridge quayside. As the smoke and fumes drifted over most of Southampton she wondered if anyone else in her immediate area of Bitterne Park was suffering. Embarking on a tour within a two mile radius of her home she visited over 30 houses and interviewed mothers outside playgroups and on the phone, asking them the same question: "How have you been feeling because I've not been feeling at all well?" Her enquiries indicated that over 80 people had multiple symptoms, "predominantly severe headaches, nausea and stomach upsets but also chest pains, tension, coughing, sore throats, vomiting, skin rashes, cramps, mental confusion, loss of memory and unsteadiness. Many said they had a sense of being drugged. Asthma attacks were increased and some children became asthmatic. People complained of stinging eyes, tight chests, increased catarrh and stiffness of joints". The 2,000 tonnes of mixed swarf - metal shavings with waste oils - spontaneously combusted despite concern from the local fire brigade and local authority about the amount that had built up on the quayside. It raged for five weeks and was allowed to burn out. Despite the concerns of the communities who believed their ill health was a consequence of the fire, Dr Simon Voss, a public health consultant, was able to tell the media that he was satisfied there had been no danger to the health of the public. By dismissing the anecdotal evidence of communities, individuals, soldiers and workers exposed to low level pollution, health authorities, medical practitioners, medical institutions and insurance companies are abrogating their responsibility to public health, content instead to allow industry to dictate health standards that do not reflect the reality of peoples' lives or even contemporary scientific knowledge. Evidence of pollution allows industry to argue that their processes are not to blame for modern illness like Chronic Fatigue Syndrome, Gulf War Syndrome, Myalgic Encephalomyelitis (better known as ME) and Multiple Chemical Sensitivity. It is now becoming obvious that acute exposures to the chemical mix in the air, in the water and in our food can trigger diverse reactions in chemically sensitive individuals and occasionally lead to sensitivity in otherwise healthy people. Chemicals are regarded as relatively harmless if clinical damage cannot be detected. According to those prepared to accept that there is a real problem, animal models, clinicopathological studies and epidemiological investigations are regarded as not sensitive enough to detect the effects of low level exposures to pollutants. Animal models are used to study the effects of high doses of chemicals but as Nicholas Ashford and Claudia Miller note in Chemical Exposures: Low Levels and High Stakes, "rats, mice and other animals are unable to tell researchers if they have headaches, fell depressed or anxious or are nauseated"; they conclude, "thus, the subtle effects of low level chemical exposure may be missed completely".
Cora Lonsdale thought the doctors' response was absurd. Fed up with the intransigence of the local health authority she had put together a questionnaire herself and sent it out. It was a simple exercise; she wanted to know what environmental illnesses people were suffering from. In her own estate, Stanney Grange, 325 forms covering 928 people were returned. Another 136 forms covering 496 people were returned from neighbouring areas of Ellesmere Port. Out of the total of 461 forms (1,424 people) she noted 183 cases of asthma, 30 of bronchitis, 217 relating to chest, eyes and nose and 52 to eczema, cancer, angina and heart. On her own estate the 52 of the 129 asthma cases were in children under 10 years of age. "These are only the ones we know about," she announced. "We know something is going on and we will not be fooled any longer. This survey proves the point and some of the results are frightening. We just hope it can be the start of an in-depth enquiry by the council; if they can send out forms for elections and the census they can come round and find out in detail about our health problems. They would get a hell of a shock." But the council weren't impressed. Their medical advisor, Dr Paul Hunter, challenged the survey, suggesting that it was statistically open to bias. Smoking rather than local pollution was as likely to have an adverse effect on health trends. The increase in asthma, he added, was consistent with the national average. Cora Lonsdale refused to have her survey dismissed so lightly. "There was no statistical bias in our survey, just the truth, and you are left wondering what these people are trying to hide. What they say to patients privately is that Ellesmere Port's atmosphere is not conducive to good health. Why don't they say that publicly; who is pulling their strings? What we have heard from the doctors so far hardly gives confidence, but one thing is certain, smoking is not at the root of Ellesmere Port's health problems and it is a joke to even suggest it." And clinicopathological studies, because they rely on the presence of a clinical sign, laboratory measurement or tissue pathology, are, add Ashford and Miller, "not likely to be sensitive to the early effects of low level exposures, that is prior to end-organ damage".
Newsome and Lonsdale were lucky. The medical profession chose to dismiss them. In different circumstances they might have found themselves "sectioned" and carted off to a mental institution. The stuff of spy thrillers surely. No, the stuff of reality, because you see Chronic Fatigue Syndrome, Gulf War Syndrome, ME and Multiple Chemical Sensitivity do not exist. They are the figment of tortured imaginations. According to Walker, "Those who propose the view that these illnesses have a psychological origin, really mean just that - these illnesses and all their manifestations are produced by a disturbance of mental processes, an aspect of mental ill health". The fact that science has known for a long time that chemically induced illnesses are a consequence of industry and its processes is really not the issue, that issue is liability - who pays? For the majority of the 20th century it was the sufferers of chemical induced illnesses who paid while the chemical industry, the medical profession and the insurance companies carefully and cleverly invented the Big Lie, because they and those who used industrial products, including the militaries of the world, did not want to pay. This is the essence of Martin Walker's book. Sadly, the history of the collusion between the chemical industry and the medical and insurance professions is not in the public domain. Walker is among a small group of people who have struggled to reveal the cynicism, lies and revisionism, and to give hope to people, including those who have been wrongly accused. This is the real essence of his book, the simple fact that people like Newsome and Lonsdale were not crazy in the head, that their studies based on anecdotal evidence were true, and that chemically induced illnesses such as Chronic Fatigue Syndrome, Gulf War Syndrome, ME and Multiple Chemical Sensitivity not only exist, they are harming people.
The title of the book suggests that the medical profession, particularly the psychiatric wing, is biased. There is clearly no argument about that, yet Walker has not prejudged them. "It is important with respect to the academics and scientists involved that we retain a balanced perspective," he writes. "We have to assume that these individuals have sincerely held beliefs, which they act out according to their professional understanding". Given his own knowledge - and Skewed is one of the best examples of investigation around - this is an admirable stance. At the conclusion of the book Walker is correct when he states that it "would be unwise to hold our breath in anticipation of a serious, well funded, scientific medical or even judicial examination of the cause of ME and other fatigue illnesses". It is unwise because the cost to industry would be too high, leaving us all to "the mercy of corporate interests and those who act consciously or unconsciously as their agents". Martin Walker's book reveals only one aspect of this story. It is a not a book about science nor even a book about the illnesses involved. It is a book about the extent industry will go to protect its interests. We need more writers doing investigations like Martin Walker to make industry accountable for their actions, and to make them pay, as individuals, for these actions.
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A masterpiece of investigative journalism and alternative scholarship, elegantly written
