“Reflections on ‘Voices from the Shadows’- after reading ‘Principles of Social Change’ by Prof. Leonard Jason.”
By Natalie Boulton August 2013 – published in “Severe ME” by Greg Crowhurst 2013
Making the film
‘Voices from the Shadows’(1) is a small self-funded film project that grew out of listening to the stories of patients with ME and making the book ‘Lost Voices from a Hidden Illness’.(2) We started gathering material without really knowing what direction the film would go in, but a focus soon emerged after we showed the interviews to a TV producer. He astonished us by saying we had some of the most powerful material he had seen and how horrified he was by the abuse of patients it revealed. Furthermore, he suggested this would be a more compelling theme for the film than ME, which was generally considered to be rather a ‘turn off’. We were quite shocked by his reaction. The interviews had started as an exploration of aspects of the world we live in every day: the world of caring for people who are ill with a misunderstood and severe illness, who often lack support, understanding and informed input from healthcare professionals. To recognize that we were in fact dealing with ‘abuse’ was daunting. We hadn’t deliberately selected these people because they had suffered at the hands of others but, none the less, we found again and again that the experiences recounted to us were almost unbelievably awful, to the point where we reeled away afterwards, barely able to stand or speak or think. How could we hear these accounts and join the string of people who had heard and turned a blind eye?
One of the doctors we spoke to said that there seems to be something about ME that brings out the very worst in some professionals. And certainly, we have come across many accounts of this, particularly from young people. It is something that goes largely unreported and unacknowledged. I had known Naomi for several years and worked with her when she contributed to ‘Lost Voices from a Hidden Illness’, but I had no idea that as we interviewed her for the film she would reveal such traumatic experiences from her hospital admissions and her subsequent treatment. Neither had we any idea of the full horror of Lynn’s hospital experiences, which we felt unable to include in the film because they were so shocking; or B’s childhood experiences at the hands of hospital staff which have left her unable to walk, bed-bound and utterly traumatised. And we knew nothing of Sophia’s articulate defense and expression of her needs and wishes when being committed to a psychiatric hospital, against her will, by a psychiatrist- a professional who was totally incapable of taking into account her informed views and explanations when they conflicted with his preconceptions. This refusal ultimately cost her her life (3)
In the light of such experiences as are told in the film and many other friends accounts, we are left facing the question: “How is it possible for otherwise responsible and caring individuals to carry out such brutal acts – even to the point of initiating actions leading to death”?
A wider perspective
There is clearly something about the relationship between our culture, the healthcare professions and the illness ME that can sometimes result in seemingly compassionate professionals carrying out acts which are not only counter to the GMC’s ‘Good medical practice guidance’, but are quite simply a shocking abuse of fundamental human rights. The film draws attention to some extreme cases, but sadly there are many others. Moreover, patients have regularly been subjected to innumerable acts of petty cruelty and viciousness; acts that are institutionally condoned. Patients usually feel too vulnerable to report these incidents and are afraid of causing further attack or retaliation. For example, a young woman I know was, as a child with ME, screamed at, hit with cushions and physically dragged bump by bump up the stairs when she was too weak to move by herself. This was carried out by the social services carer entrusted with her care. Reports are all too frequent of hospital staff forcing children out of their wheelchairs to compel them to try to crawl when they are unable to walk, or of not providing food in a form they could access.
And these are relatively speaking the more minor things – not the threats of removal or the actual removal of children from their parents – to be taken into care or into hospital, where many have then been forcibly subjected to life changing psychiatric mis-management of their illness. Accusations that parents are causing a child’s continuing illness are used as an excuse for removing a sick child from their family home and parental care, so enabling professionals to force the child to comply with their ‘right’ treatment. It can be a very, very lengthy and costly business to fight what amounts to State-sanctioned abduction, as a university professor recently described to the All Party Parliamentary Group for CFS/ME (4) in an account of his 26 year struggle to protect his son.Other appalling cases, where young ME patients have been removed or are being threatened with removal from their parents, are still taking place to this day.
Dr Leonard Jason, a Professor of Psychology and Director of the DePaul University Community Research Centre in Chicago, is interviewed in the film. In his recent book ‘Principles of Social Change’ (5) he throws light on many aspects of the situation facing ME patients, including the abuse some patients experience. Jason describes the horrific case of a boy whose mother he spoke to while he was on a visit to England. Her son Ean had become so ill with ME that he was effectively paralysed and unable to speak. He was subjected to psychiatric care during which he would be raced along at speed in his wheelchair. This would then be suddenly halted, ejecting him onto the hard floor and on one occasion causing him a back injury. On another occasion he was thrown into a swimming pool where he sank and nearly drowned before he was rescued.(6) These and other disturbing aspects of his care were brutal attempts to physically force him into activity. It is hard to believe that actions such as these could have been carried out against a very sick child by healthcare staff, but it is vitally necessary to acknowledge that such things take place and to try and understand some of the factors that contribute to an environment where such events are condoned.
Professor Jason helps shed some light on this situation by reminding us that in certain circumstances, in what he calls ‘total environments’ such as prisons and even schools where there is a fixed and authoritarian hierarchy, some normally sensitive and compassionate people can start to act in ways that are inhumane and abusive. These sorts of environments may not only foster such responses, but may provide an institutional context within which these can become the accepted norm. He refers as an example to the famous Stanford Prison Experiment (7) conducted by the psychologist Philip Zimbardo, where ordinary and personable students, having taken on the roles of prison guards, started to behave cruelly and sadistically towards those students adopting the role of prisoners. Many examples of similar cruelty exist. It seems that few of us are willing to stand out against a dominant culture and viewpoint, even when it is utterly inhumane, if we are immersed in it and believe that our superiors endorse such behavior. This seems a crucial factor which may help explain why it is that some healthcare professionals are able to ‘bracket’ normal human feelings of compassion and empathy for the patients they are caring for, and act with a degree of vicious cruelty and callousness which beggars belief.
Some of the worst excesses of cruelty have occurred when very ill young patients who had previously been diagnosed with ME/CFS, were subsequently placed under the care of psychiatrists. Like Ean Proctor who’s story Jason describes, the young women shown in ‘Voices from the Shadows’, Lynn Gilderdale (8) and Sophia Mirza, were also placed under the care of psychiatrists in spite of having been previously diagnosed with a physical illness. It seems therefore that we must specifically consider the role that psychiatry has played in order to further our understanding.
The influence of psychiatry
Part of the problem for ME patients is that they have been caught in the crossfire between medicine and psychiatry: a struggle over the borders and the overlap between these disciplines, and more pertinently the increasingly vicious struggles for power, jobs and research funding. Many diseases such as Multiple Sclerosis (previously called ‘hysterical paralysis’) and stomach ulcers, which were for a long time considered to be caused by stress, have now been found to have predominantly medical causes. Even some types of back pain and depression are now associated with inflammation caused by viral and bacterial infections. The areas in which psychiatrists have traditionally had a major role to play are shrinking, leading to an increased emphasis on social, behavioural and psychological aspects of illness and the rise of what is called a biopsychosocial view of medicine. This approach, which is actually more often a psycho-social view, is now coming under fire.(9) Some of the symptoms of ME/CFS can appear superficially similar to those of Major Depressive Disorder,(10) with the disastrous consequence that ME/CFS has been incorporated into a growing field within which some psychiatrist have built careers, claiming that they have relevant expertise.
This has happened in spite of the illnesses ME or CFS (as it has been named in the USA) being clearly recognised as an organic neurological illness by the World Health Organisation. Evidence demonstrating a complex chronic physical illness has been growing for decades and there is now irrefutable evidence of a complex multi-system illness with severe inflammatory, neurological, immune, endocrine and cardiovascular dysfunction. Biomarkers for some subsets of ME/CFS are becoming available at last, and when antivirals and immunomodulators such as Ampligen, Rituximab, Valtrex, Valcyte and Vistide and pooled Immunoglobulins are carefully targeted at relevant subgroups they can make a substantial impact in treating patients, enabling many to return to work. At long last some substantial medical research into cardiovascular and immune abnormalities in ME/CFS is now being funded in the UK, by both the Medical Research Council and even the USA’s National Institutes of Health.
In spite of this patients with ME remain frighteningly vulnerable to the dominant and widely promoted psychosocial behvioural management approach to CFS/ME; first published in 1989.(11) It is now firmly established in NHS policy in spite of being largely inconsistent with the accumulating body of international biomedical research. These psychosocial ideas have been dominant in the UK for the last two decades and are very firmly entrenched. For example, I recently attended a professional gathering of doctors where they were informed that the problem of CFS/ME has been almost entirely caused by the shockingly negative image promoted by ME charities (the ME Association in particular) and the media.(12) We were told that patients have been harmed, both by being frightened into believing that they have an incurable illness caused by a virus, and especially by being told that they should rest. This, it was claimed, had led to patients being over-attentive to symptoms, fearful of activity therefore avoiding it, resulting in them becoming trapped in a cycle of boom and bust attempts at activity which make them feel worse, rest more, and so become de-conditioned and subject to myriad symptoms. In fact the more symptoms a patient has, the speaker explained, the more likely that the patient has psychological problems.
In this account no distinction was made between the various different conditions of chronic fatigue (which is both a psychiatric diagnosis and also a symptom of many serious physical illnesses), chronic fatigue syndrome (which means totally different things to different people), post viral fatigue syndrome, and myalgic encephalomyelitis. These were all loosely referred to as if they were the same illness with the same causes, and doctors were assured that patients would all benefit from the same management programmes.
Perceptions of responsibility
The psychosocial views described above assume that the illness is a reversible process and that it is within the power of patients to effect their recovery. The implication that patients are in some way complicit in their illness is, I think, key to understanding why they are so often subjected to an absence of natural compassion and empathy or, at worst, outright cruelty. It is as if their continuing illness is seen almost as a matter of choice: if it is within the patient’s power to effect their own recovery, then they must be colluding in prolonging their illness. This could account for actions such as those of the healthcare professionals who tried to force Ean into activity. A more subtle version of this view is implicit in the advice given to doctors – the NICE Guideline for CFS/ME – through its recommendation of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as being effective and successful treatments. In this way NICE (the National Institute of Clinical Excellence), perhaps inadvertently, supports the view that if a patient fails to recover, then it is a reversible consequence of their supposed ‘fear of engaging in activity’, ‘avoidance of activity’ and ensuing deconditioning – the underlying assumptions for using GET and CBT in the PACE Trial.(13) This is a very dangerous misunderstanding of the illness and it is still being vigorously promoted by some psychiatrists and therapists, in total disregard of the fact that specialist exercise and fatigue researchers have clearly demonstrated that deconditioning is not the cause of patients remaining ill.(14) When an ME patient’s ‘mistaken ideas’ are assumed to be the reason for them remaining ill then problems inevitably arise, since the corollary is that these ideas ‘must’ be changed; perhaps even, by whatever means necessary.
This view of ME has disastrous consequences on several levels. When a doctor assumes ME is a behavioural or psychogenic illness, further medical investigations can be considered unnecessary and even counterproductive, since it can be considered that they would endorse the patient’s belief that they were physically ill. One young woman recounts being accused of intentionally vomiting in order to lose weight, because her ME caused her severe reflux. An eating disorder misdiagnosis was glibly given by one doctor and determined subsequent management. “It was a very difficult label to shift” she says. “The Doctors were convinced that was what was wrong with me… I had terrible treatment at the hands of the consultant… He refused to believe that I couldn’t walk and claimed I was just looking for attention…” “How could I prove to them that I wasn’t making myself sick to lose weight? I felt my only option was to swallow my own sick. I did this after every meal for 6 months. A later test showed my food trying to come back up 120 times a day, 120 times a day, I swallowed it back down…. The surgeon was flabbergasted that this result was ignored. He booked me in for an operation and it had an immediate effect, my reflux was gone.“
Another adolescent diagnosed with CFS, with some of the classic symptoms of ME, has suffered excruciating chest pain for more than five years. Recently his carer told me, “He now has constant chest pain and two or three times a day it’s severe and makes him scream in agony…. Last November he passed out with pain, I couldn’t revive him and had to call an ambulance…. It does seem as though he just has to live and cope with it.” “It’s the most horrendous illness and it’s such a time consuming and endless battle getting support and understanding.“
Patients who have been ill since childhood have had a particularly difficult time: as children they were totally at the mercy of adults and professionals. It is still being claimed that some very severely ill young patients can’t possibly have ME because they are far too ill. ‘Voices’ includes some examples of the way in which many young people have deteriorated severely as a consequence of having carefully followed specialist professional advice involving behavioural management programmes. A children’s charity even endorses such treatments whole-heartedly. In a complaint to their charity, members and ex-members pointed out that the charity’s enthusiastic support for both the PACE Trial and the Lightning Process had resulted in a skewed picture being presented to children and their families; one involving misinformation about the safety of ‘treatments’ and including no mention of the existence of evidence relating to potential harm and ineffectiveness. They pointed out that many of them had “already been harmed by these approaches” and that others will likely be harmed in future, but their views were summarily dismissed. It is clear that many adults just do not want to learn from their mistakes and refuse to acknowledge the harm they have inflicted on children.
Another consequence of considering ME to be a psychosocial condition is that after years and sometimes decades of being severely ill, some people are eventually discovering that they were given a wrong or incomplete diagnosis. They discover they actually have other physical illnesses which could have been effectively treated or cured years ago if they had been diagnosed accurately. A further problem concerning diagnosis is that ME is not a static illness and complications and various co-morbidities frequently develop as the illness progresses.(15) It is imperative that these complex clinical cases should be accurately diagnosed, monitored and medically treated where possible; not just dismissed and ignored as so often happens when the patient is presumed to be paying too much attention to and exaggerating their symptoms. Medical negligence is resulting in severe treatable illness being misdiagnosed as ‘just ME’ and ignored.
Factors contributing to the problem – the name
In ‘Principles of Social Change’ Professor Jason describes a number of factors that have contributed negatively to medical and public perceptions of the illness ME/CFS. The well established name of Myalgic Encephalomyelitis was replaced with the name Chronic Fatigue Syndrome by the USA’s Centers for Disease Control and Prevention (CDC) in 1988. This, Jason says, had the effect of trivializing the illness and stigmatizing patients. A name with a significant medical meaning, in this case a description involving the brain, inflammation and muscle pain, describes this serious organic illness far more accurately than a name simply identifying fatigue. Because everyone experiences fatigue at times, people can easily assume that their fatigue is in some way comparable with the experience of ME patients. People usually expect to be able to ‘push through’ the fatigue to achieve more or to recover. Unfortunately, when people with ME take this approach they become even more seriously ill. In fact, this abnormal response to increased activity is integral to the way the illness is defined.
For me, one of the more shocking moments in Professor Jason’s book is his description of a meeting with the man responsible for research into CFS (ME) at the CDC; a man capable of directing millions of dollars into understanding and finding treatments for an illness that has devastated many hundreds of thousands of lives – millions world wide. Jason describes how this man looked him in the eye and told him that: “if patients were willing to push through the pain and work to rehabilitate themselves – like him [recovering from a broken leg] – they would completely recover”! Such ignorance and prejudice from someone at the head of those responsible for helping patients is terrifying. How many lives, both children and adults, could have been saved if he had taken the trouble to spend time reading the research or listening to patients; discovering the reality of their suffering and the true nature of the illness?
The names chronic fatigue, chronic fatigue syndrome, CFS/ME ME and ME/CFS are frequently being used in the UK as if they were the same illness and the same as Myalgic Encephalomyelitis. Even more confusingly the NHS uses the name CFS/ME in a very general way to refer to a range of fatigue conditions that do not conform to any of the more specific research and diagnostic criteria for CFS or ME. The NHS identification of a patient with CFS/ME is merely someone who is experiencing four months of disabling fatigue with one or more symptoms from a list (such as disturbed sleep).(16) It bears almost no resemblance to the more specific definitions which attempt to identify patients with the illness listed in the World Health Organisation International Classification of Diseases at G93.3.17) (17)
Definitions and prevalence
This utter confusion with regard to names, with different names being used – and different illnesses being merged – is integral to a fundamental and damaging issue which Professor Jason discusses: that of definitions and the perceived prevalence of the illness. It is a trap that has already been identified and there are attempts to address this issue in the USA, where estimated numbers of patients with CFS (the American name used for ME) rose from the insignificant 20,000 to the more accurate 800,000 and then, with the new CDC definition, mistakenly shot up to 4 million. This change of definition and prevalence was at first backed by some CFS charities who thought that larger numbers would result in the advantage of more funds for research. However Jason and his colleagues demonstrated that with this new definition a substantial proportion of those with a diagnosis of depression had suddenly become eligible for a CFS (ME) diagnosis! The dangers of using imprecise criteria, which include a heterogeneous collection of patients, possibly including those with psychogenic illness, started to be recognised and this definition is no longer supported by the ME/CFS charities there. A consequence of such broad criteria is, as Jason quotes: “ If a diagnostic category includes both those with and without an illness, biologic markers of those with the illness will not be consistently found. Illnesses without biological markers are often referred to as medically unexplained, and then researchers seek psychogenic explanations of the syndromes (Barsky and Borus 1999)”(18)
In the UK these intertwined issues of prevalence and the need for precision and accuracy in making a diagnosis are not being adequately understood and dealt with – to put it mildly. This failing has a profound impact on the way patients are viewed and treated. It is relevant to mention here that Llewellyn King – founder, executive producer, host and journalist for the White House Chronicle and ‘CFS/ME Alert‘ videos – told me that the most shocking stories he hears from ME patients around the world come from patients here in the UK.
We are faced with an extremely muddled and confused situation, which it might be fair to say, has been intentionally contrived. Not only are psychiatrists using totally inappropriate criteria for research (which include a large proportion of patients with psychogenic illness as opposed to ME/CFS) but, even more perversely, the NHS has subsumed ME, chronic fatigue and CFS into a very broad category of fatigued patients who are then referred to as having CFS/ME or even ‘CFS or ME’. In the UK the estimated figures quoted regarding numbers of patients with ME are rising. ME Research UK uses a more conservative figure of between 120,000 and 240,000 with the mid point of 190,000 often being quoted by them, whereas a more generous 250,000 is frequently quoted by the NHS and by most charities. To put this in context; this is roughly twice the number of patients with Multiple Sclerosis. However it is alarming to see that a figure of 600,000 sufferers is now frequently claimed. Examples are the Research Collaborative Press release(19) , Bristol University website which is closely allied, and even Annette Brooke MP in the ‘Early day motion 212’ stretches the figures to include this new and sudden expansion of patient numbers.
When prevalence percentages for ME are quoted, numbers appear to be rising even more bizarrely. L Nacul and researchers from the UK National ME Observatory found a prevalence for ME/CFS of around 0.2% , which would equate to 127,000 patients with ME/CFS (20). Far larger percentages of 1- 2% (21) or 1-2.4% are quoted for CFS/ME.(22) Few people realise that this larger percentage would signify that between 637,400 and 1.5 million patients are affected! Patient numbers ranging anywhere between 120,000 and 1,500,000 are being quoted with no precision as to which illness or illnesses are being referred to. Jason explains that it may be significant that the prevalence estimate for CFS of 2.5% (based on the new CDC definition) is similar to prevalence estimates for Major Depressive Disorder.(23) It is obvious that when figures such as 1 – 2% are glibly quoted for the prevalence of patients with ME or ‘CFS or ME’, these must in fact relate to fatigued patients with a mix of psychological, behavioural and physical causes for their conditions and not patients with ME. The population of chronically fatigued patients is so large that the far smaller proportion of patients who have the illness originally identified as Myalgic Encephalomyelitis or ME must inevitably become all but invisible and unrepresented by research results based on broad or inaccurate criteria.
The consequences of this confusion may actually be even worse than described above. Dr G Spickett explains in the 2012-13 Northern CFS/ME Clinical Network Report: “It is now clear that fatigue is strongly associated with a range of other medical problems, and that this is not being well addressed by organ-based specialists.”(24) He states that 74% of patients referred to their clinic have alternative explanations for their fatigue and goes on to say: “The next stage is to develop more broadly based fatigue services” for these patients. He confirms that these fatigued patients do not meet even the NHS criteria for CFS/ME, the patients for whom the clinics were originally intended. If the emphasis is now allowed to shift towards maintaining a large supply of therapists providing CBT and GET for a multitude of fatigued patients suffering from many different illnesses, it would quickly absorb all available funding and ME patients could become even more disenfranchised and devastatingly abandoned. The prioritising of this more ‘all-inclusive ’ approach, would make the provision of appropriate medical treatment for ME patients even more difficult. As a tiny proportion of patients, including many who are too ill to access services, they would disappear from sight among the overwhelmingly numerous fatigued patients. ME patients, whether they are mildly, moderately or severely affected, are all liable to deteriorate irrevocably if subjected to mismanagement with graded exercise, so the long term financial cost of making this mistake could be very substantial.
Competition over funding
In the UK the Medical Research Council, having neglected biomedical research into ME for decades, is at last heeding calls to specifically allocate funding towards research into “the mechanisms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)”. However, this potential funding seems to have affected researchers as the smell of blood affects sharks, with the usual recipients of funding appearing to be quickly manoeuvring to take advantage of the situation. Not only are numbers being vastly inflated to include a wide spectrum of fatigued patients, but paradoxically the illness is simultaneously being described as very severe and disabling. “CFS or ME can leave many people either housebound or confined to their bed for months or years,” says the press release for the recent and much lauded CFS/ME Research Collaborative. At the same time the same press release makes the extraordinary assertion that: “Predisposing factors include female sex, functional somatic syndromes, and prior mood disorders.” (Functional somatic syndromes have no organic disease explanation, structural lesions or established biochemical changes. P Manu ’98)
A similar example of the conflation of different conditions can be seen when Action for ME asserts that ME is a very serious condition affecting 250,000 people, while simultaneously claiming that 1% of 11-16 year olds have ME.(25) This statistic is probably being quoted for publicity effect as if it applied to the illness ME, without acknowledgement that this statistic was derived from research (26) which used none of the internationally recognised research and diagnostic criteria for the illness ME, but merely the nonspecific NHS chronic fatigue label of CFS/ME.(27)
To summarise, although ME is listed as a neurological condition by the World Health Organization, and recent research shows it to be a complex chronic multi-system illness involving severe inflammatory, immunologic and cardiovascular dysfunction, it is now being persistently confused with other more prevalent and often unrelated fatigue conditions, including psychogenic illnesses, for what appear to be financial or career advantages. Inflated prevalence rates caused by imprecise or inaccurate criteria which include a majority of patients who do not have ME, will support researchers whose expertise involves psychological and behavioural management of fatigue. The intentional confusion of different conditions results in untold harm; not only robbing ME patients of the benefits of meaningful research and medical treatments, but also fueling negative medical, public and media beliefs about patients and even depriving some mis-diagnosed patients of treatments for conditions which then remained undiagnosed.
The media and the Science Media Centre
The media have an enormous impact on the way we view what is going on around us, since few of us are in a position to directly experience many aspects of current events. Consequently, much of the time our views are formed by what the media tell us. It is in this context that the Science Media Centre (SMC), a charity set up to provide information to journalists, needs to be understood. Its Mental Health Section, formed three years ago, aims to bring mental health research more consistently into the public domain, particularly so as to support the mental health research community.(28) It undertakes major initiatives with a view to promoting its own interests and exerting influence, providing selected information to news journalists for newspapers, TV, and radio, including information for feature programmes. So it is a matter of real concern that the Science Media Centre (SMC) has taken it upon itself to arbitrarily locate ME or CFS, a recognised physical illness, within their Mental Health Section. This blatant mis-categorisation of ME as a mental health issue has resulted in a large number of distorted articles that have contributed to public misconceptions and stigma against patients. For example, inaccurate information available on the Bristol University website which links ME and CFS with functional somatic syndromes and prior mood disorders and claims beliefs about causation can be an important maintaining factor, was deceptively added to the CFS/ME Collaborative Launch press release.(21) I am told this was done without the knowledge or agreement of most participating ME charities. It would seem that this was possible because the SMC hosted the launch of the Research Collaborative. Manipulation of the media has long played a role in spreading inaccurate information, prejudice and stigma.
So it is of great concern that the recent change in attitude towards the severely ill, mentioned earlier, appears to have been initiated by the Mental Health section of the Science Media Centre during a brainstorming session on CFS/ME, held earlier this year. Their review states “It was agreed that more must be invested in putting the case for research of chronic fatigue syndrome/ME explaining the burden and seriousness of the disease both to the media and the public.” (28) Most patients would whole-heartedly agree with this. However, when you remember that the declared purpose of the Mental Health section of the SMC is to support mental health researchers, it then appears in a rather different light. Could it be a callous manipulation of patients, the public and the media, in order to support those researchers who have appropriated ME as a mental health issue and have already caused incalculable harm to patients, both adults and children?
There seems to be a cold blooded strategy to ensure job security and career progression for certain researchers; one driven by the increasingly life or death scramble for university jobs and research funding when universities and the NHS are being cut to the bone. Few people outside academia are aware of the effect the Research Excellence Framework (REF) is having on the economics and realpolitik of research. To keep their jobs, academic researchers must now win sufficient research grants – from a diminishing pool of resources – to enable them to produce four research publications over a five-year period. The regular manufacture of ‘important’ research topics and the number of publications these can lead to, rather than the quality or relevance of research, is now the bottom line for survival as an academic researcher.
Conflicting views open the door to abuse
From a medical perspective advances in medical science are confirming severe abnormalities affecting all systems in the body, placing the illness ME (or ME/CFS as it is often now called in the USA), squarely alongside other life threatening conditions such as MS, polio, heart disease, AIDS, and lupus. Delayed post-exertional deterioration, disruption to the immune system resulting in reactivation of many viruses and other pathogens, a decrease in blood volume and flow affecting many organs including the brain, brain dysfunction causing neurocognitive and neuroendocrine changes, and autonomic nervous system dysfunction, are all amply proved to be integral to ME. These result in patients being particularly vulnerable to stressors, whether from infections, exercise, temperature changes, noise, chemicals, light or even emotional and psychological stress. Moreover, there are now precise and objective means of measuring the unexpectedly severe level of physical incapacity experienced by patients, by using 2-day cardio-pulmonary exercise testing (CPET).(29)
But, from another perspective, patients are considered to be implicated in causing their illness, or more accurately, the perpetuation of their illness (since an initial viral infection is now more widely acknowledged) through their distorted beliefs and actions – or lack of action. They are portrayed as lazy and work-shy, too hard working or perfectionist, subject to ‘boom and bust’ activity, over-attentive to symptoms and afraid of activity, or even intentionally made ill by needy mothers trying to attract attention (Munchausen’s Syndrome by Proxy). From this medically unacceptable perspective, therapy should obviously be aimed at ‘helping’ patients by challenging their understanding of their own experiences and perceptions, which are patently mistaken and can’t be relied on as a guide to recovery. Many professionals with no personal experience of the illness are influenced by such views, which have been pervasive since the late 80s.
From this damaging perspective professionals consider, on the basis of their ‘superior’ knowledge, that they have a responsibility to ‘help the patient correct his or her beliefs’. This leaves the patient in an extremely vulnerable position if the professional is ignorant or misinformed. This sense of having superior knowledge and authority has further dangers, as Professor Jason points out. Referring to Zimbardo’s Stanford prison experiment mentioned earlier, he says: “the exercise was a stunning demonstration of how environment, job titles and preconceived roles can dramatically influence the way we interact with others.” This psychological weakness is well known: the danger of people behaving in callous and inhumane ways under certain conditions if they consider these to be justified by their role and condoned by others. Unfortunately it seems that there are inadequate safeguards in place in a number of situations in our society, including those where vulnerable ME patients’ lives are at risk.
For ME patients in the UK this problem may actually be exacerbated by a system where healthcare professionals often work in multidisciplinary teams. Instead of offering a safety net against individual misconduct and malice, these can promote a group consensus creating something akin to a ‘total environment’ like those that exist, as Professor Jason explains, in other more obviously authoritarian institutions. Young people with a severe but little understood physical illness and their families are at a terrible disadvantage when faced with teams of professionals who are assured of psychogenic causes for the patient remaining ill and convinced that they ‘know best’. In this context personal experience counts as nothing against ‘evidenced based research’ – even if that research is based on evidence derived from subjects with an altogether different illness or a much milder form of the illness, and the research conclusions have been widely exaggerated and misrepresented as resoundingly positive.(30) If the personal experiences of the patients and carers are not consistent with the professional view, then they are frequently denied and ignored. This happens in spite of the NICE Guideline recommendation that treatment should involve “shared decision making between the person with CFS/ME and healthcare professionals” and that “Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.”
A paradigm change is needed
When ME patients are persuaded to believe in, or are forced into a regime of exercise or activity management based on an incorrect understanding of ME, they are frequently irrevocably harmed – as both ‘Voices from the Shadows’ and ‘Lost Voices from a Hidden Illness’ testify. Unfortunately these ‘mistakes’ are all too common and many, many patients have been harmed to some degree, both physically and psychologically, by forcible insistence on the ‘right’ treatment approach or the more subtle use of persuasion, encouragement, coercion, and an insistence on the status quo. As Naomi’s Mum said to me about the exercise programme that took away the use of her daughters legs and confined her to a silent darkened bedroom for much of the day: “She wanted to do it. She really tried, because she was desperate to get better and they insisted that was what she had to do to get better. We all believed them.” Twenty years later Naomi remains unable to walk.
Most of those who have suffered in this way remain silent of necessity. They are too vulnerable to do otherwise. They may have no way of reporting abuse without risking retaliation, or they may not actually realise quite how abusive the situation is. I am reminded of the recent revelations about music school teaching, where some children and students in the ‘total environment’ of music schools have been subject to sexual abuse by their teachers. This has been brought to light by the courage of one woman and her subsequent suicide. A situation that was tolerated for decades in these privileged institutions is now, when subject to police and judicial scrutiny, seen as totally immoral and unacceptable. An extensive network of abuse has been revealed, one long condoned by those in authority and sometimes not even fully recognised for what it was by the children involved. It remained hidden for decades, masked by what were apparently the highest motives: public success, and the nurture of talent through hard work.(31) A similar paradigm shift is long overdue for ME patients: a reality check requiring healthcare professionals to face up to the neglect and harm inflicted on sick ME patients, both by individuals and by the profession as a whole.
The psychogenic misattribution spreads and devastates lives – to this day
In the USA the AIDS Coalition to Unleash Power (ACT UP) played a major role in changing public attitudes to HIV/AIDS. “…united in anger and committed to direct action to end the AIDS crisis“, their website says: “We demonstrate. WE ARE NOT SILENT. We challenge anyone who, by their actions or inaction, hinders the fight against AIDS.“ For better or worse, this more active and aggressive approach to bringing about change is simply not a viable option for patients with severe ME. They are usually far too ill to demonstrate effectively themselves and their carers already struggle to cope with growing demands placed on them. Patients and carers are often isolated, intimidated, and frequently impoverished after many years (even decades) of being too ill to work and needing a partner or parent’s care. ME patients are therefore utterly dependent on others to help them try to redress the power imbalances that destroy their lives.
So it is that, relatively unchallenged, the psychiatric and psychosocial views of ME have gained a hold around the world and some ME patients are subjected to appalling levels of institutional abuse. For example, in February this year Karina, a desperately ill 24 year old Danish woman who has repeatedly been diagnosed with ME was in bed. Five policemen, two doctors, two social workers, and a locksmith came to her home and forcibly removed her from her bed and transported her to Hammel Neurocenter.(32) Her parents were not allowed to go with her or see her. Although GET has previously made her worse, that is the treatment being forced on her. When asked whether she is capable of speaking in complete sentences the doctor replied in May: “She says and has always said, ‘You are killing me.’ That is a whole sentence.” (33) Her parents have not been allowed to see her or communicate with her in any way since she was snatched. It is now well over six months.
In England a 28 year old man who has been diagnosed with epilepsy and ME, has been declared to ‘lack capacity’. According to the views of the experienced consultant who was responsible for his care for many years, this is an inaccurate assessment. As a consequence of this apparently quite arbitrary decision, not only is this young man considered ineligible to contribute to major decisions determining his life and care, but for some bizarre reason his mother is also excluded from helping make these decisions.(34) He has been made a ward of the Official Solicitor, taken into social services care and is being treated as though his mother was in some way responsible for him being ill. Although the accusation of Munchausen’s syndrome by proxy (MSBP) has not actually been voiced, he is not being allowed visits from, or contact with, his mother who is both his carer and his only family. This tragic situation has already gone on for over two years and now looks likely to continue indefinitely. Like Karina and her parents, both he and his mother have been deprived of any rights whatsoever concerning his care and treatment.
Situations such as these continue year after year. The children’s charity TYMES Trust has now dealt with 96 erroneous cases of child protection investigations. These are often triggered because professionals are mistakenly convinced that ME cannot possibly be so severe and long lasting. One consultant paediatrician states that he is currently involved with three poorly founded cases of child care proceedings concerning young people with ME in the UK. This is nothing short of State-sanctioned abuse.
One tragic consequence of a lack of understanding of the true nature of the illness is that, along with heart failure, suicide is one of the more common causes of death among ME patients.(35) Lynn took her own life when her condition was so severe that she was being kept alive by medical interventions year after year. She simply couldn’t face another winter of hospital admissions where she risked a repeat of the physical and psychological trauma she had suffered during previous admissions. During the making of ‘Voices’ her mother Kay recounted to us how, when a hospital accident during a routine procedure suddenly punctured Lynn’s lung, she tried to tell the staff that Lynn couldn’t breathe but was totally dismissed and ignored as if she was making a fuss about nothing. This refusal by the staff to acknowledge that Kay’s observations could be accurate and that Lynn was unable to breathe nearly killed Lynn. When her mother quickly found another consultant who was prepared to take her observations seriously, Lynn had to be rushed to intensive care and put on a ventilator.
Emily Collingridge was another very courageous young woman who suffered from severe ME for most of her life. Full of determination she fought for proper recognition of the illness and to regain her health and she never gave up hope. Tragically, she died in hospital in London in 2012. In 2010 she wrote, “Some of my days in hospital were amongst the most frightening of my life – and all because the hospital did not provide a care environment appropriate for someone with severe ME and thus my condition was magnified a hundred times over.” “Worse was to come….” her mother wrote…. “The consultant put in charge of her care was unsympathetic, dogmatic, and overbearing. He confessed to a limited knowledge of ME and yet, when she expressed her lack of faith in him, he replied that he was all that she had.”(36) Recently her mother summed up some of the problems patients face: “In my experience, the treatment ME sufferers receive in hospital varies. Ignorance is largely to blame, whether it is disbelief in the illness or lack of understanding of the symptoms. Hospitals tend to stick to their set protocols and there is little willingness for flexibility. Arrogance can make some clinicians unprepared to learn and listen and it is all too easy to make the excuse that a case is complex and very rare and to hide behind the NICE guidelines.”
The need for activism
No one knows how many patients from all walks of life, including doctors, nurses, teachers and social workers themselves, have been physically disabled and even traumatised by the treatments they have received, been made utterly dependent on others for their care, and denied any recognition of, or apology for, the harm caused to them – including the loss of decades of their lives.
There is obviously an urgent and genuine need for activism to protect patients’ basic human rights. Professor Jason proudly refers to himself as an activist – in the best tradition of Gandhi and Martin Luther King. Activism has become almost a ‘dirty word’ in the UK – largely through a convenient political conflation by the Right with extremism – yet in many areas activism is both legitimate and necessary. Jason has been involved in very effective activism throughout most of his life and has also largely recovered from severe ME. In addition to his prolific and highly respected research and academic work (he has been awarded over twenty six million dollars in federal grants) and ME/CFS activism, he has made a profound impact by standing up against the tobacco industry to protect children’s health and by supporting Oxford House recovery programmes for those suffering alcohol and drug abuse.
The psychosocial beliefs about ME (as opposed to chronic fatigue) were long ago disproved. There is plentiful evidence from medical research showing severe functional impairment. The post-exertional deterioration which is a key identifier of the illness can be objectively and accurately measured by repeat Cardiopulmonary exercise testing.(37) Research at Newcastle University shows: “Patients with CFS have markedly reduced cardiac mass and blood pool volumes, particularly end-diastolic volume: this results in significant impairments in stroke volume and cardiac output compared to controls.”(38) Low natural killer cell function and other immune abnormalities have been widely found and may be used as biomarkers. (39) Medical researchers in the field are utterly convinced of the reality of this complex, chronic multi-system illness (40) and many of the pieces of the jigsaw of ME and CFS are now in place. However, those in the psychiatric world who have wielded the most power and so have most to lose, remain tenacious and influential members of the senior echelons of the British healthcare establishment. On top of this, the current savage cuts in benefits for the disabled and funding for the NHS, and the general level of public hostility to those who are unable to fend for themselves, continue to exacerbate a situation which makes the lives of many ME patients increasingly precarious.
Professor Jason sums up the lessons he has learned during his commitment to social justice issues related to ME/CFS. The principles he describes are interdependent, but I would like to highlight a few points, which I feel are particularly relevant at the moment in the UK. He advises that: “coalitions must work together to take advantage of developing events and shifts of power. Obstacles to change can be overcome by collaborations between the multiple gatekeepers.” He points out that it is essential to: “address the real power source and bringing coalitions and grassroots groups together to pinpoint the most meaningful areas of intervention and work on incremental wins.”
The CFIDS Association has played a major role in the USA. By 2011 it had changed its mission, Jason explains: “from being a patient advocacy organisation to one focused on raising money to fund important and innovative research aimed at identifying biological markers, advancing objective diagnoses and treating this illness.” This change of emphasis is one that some influential charities in the UK would do well to consider. Yes, there is ‘firefighting’ that need to be done to help patients with benefits and care, but until accurate biomarkers and treatments are found for ME and CFS and for subgroups, most patients will remain without any medical help whatsoever and vulnerable to abuse and mistreatment of all kinds. What patients want so desperately, and above all else, is to regain their health. This illness can be far better understood and treated. All that is needed is the will, the commitment and the money.
I will end with a typically understated quotation from Professor Jason’s inspirational book, because this is where responsibility lies for the abusive experiences endured by many patients: “The simplest and most convenient attribution of blame is sometimes not the correct one. In the case of CFS (ME) it is much easier to dismiss the legitimate claims of patients than to understand those who control the way in which stigma and bias have perpetuated inaccurate myths about patients with CFS (ME).”
Since I wrote this chapter the subject of harm resulting from broad and imprecise definitions has resurfaced in the USA as a fundamental issue. The NIH has commissioned new and separate criteria for diagnosis and for research from the Institute of Medicine (IOM). This will have an impact around the world. It has been done in spite of the fact that 35 foremost international experts in ME/CFS wrote to ask that the proposal be abandoned. The experts stated that they were all in agreement that the Canadian Criteria have proved to be important for clinical purposes and for research which, as biomarkers are defined, will enable refinement and greater accuracy in the case definition. If, as is feared, those without expertise in such a complex medical condition create the new definitions, it could yet again result in the inclusion of a broad population of patients which includes those with other conditions. The experts say that failure to adopt the CCC now would not only be a waste of precious funding but ‘will significantly impede research and harm patient care’.
I am most grateful for my husband’s help, without which I could not have struggled with writing these reflections, and I very much appreciate the inspiration and encouragement given by Professor Leonard Jason over the years. I hope others will gain as much from reading his book as I have.
3. Sophia and ME http://www.sophiaandme.org.uk.
4. All Party Parliamentary Group on ME. Westminster 13th March 2013 – minutes available from the ME Association website http://www.meassociation.org.uk/?p=15092
5. “Principles of Social Change.” Leonard A Jason Oxford University Press 2012
6. “Ean’s Story.” by his mother Barbara http://www.ahmf.org/ww-ean.html originally published in ‘Interaction’ AfME. See also “Magical Medicine.” page 78. http://www.investinme.org/Documents/Library/magical-medicine.pdf
7. Stanford Prison Experiment http://www.prisonexp.org/psychology/1
8. Kay Gilderdale “One Last Goodbye” 2011.
9. “The Rise and Fall of the Biopsychosocial Model: Reconciling Art and Science in Psychiatry.” Nassir Ghaemi. 2009 http://www.nassirghaemi.com
10. “Differential Diagnosis of Chronic Fatigue Syndrome and Major Depressive Disorder.” C Hawk, L A. Jason, and S Torres-Harding
Since Chronic Fatigue Syndrome (CFS) has been considered an alternative name for Myalgic Encephalomyelitis (ME), and is used widely in the USA to refer to the same illness, I follow Jason’s example in referring to ME/CFS. This is not at all the same as the NHS use of CFS or CFS/ME – which is used to identify a very large group of patients with a wider spectrum of conditions involving fatigue, a small proportion of whom are likely to be ME patients.
11. “The management of the Chronic Fatigue syndrome.” Wessely, David, Butler, Chalder. Journal Royal College General Practitioners 1989
12. “Research in Chronic Fatigue Syndrome – ups and downs.” Professor Sir Simon Wessely. Bristol Medico-Chirurgical Society 13th March 2013
13. “Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.” P D White et all. ”The aim of treatment was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability.”
14. “Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome.” C S Snell, S R Stevens, T E Davenport and J M Van Ness http://www.workwellfoundation.org/research-and-latest-news/
15. “Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up.” M Núñez, J Fernández-Solà, E Nuñez, J Fernández-Huerta, T Godás-Sieso, E Gomez-Gil “We also observed a significant increase in co-morbidities in both study groups at 12 months, in agreement with other reports, suggesting a marked role of co-morbidities in CFS disability” http://www.stolav.no/StOlav/Avdelinger/Smertesenteret/Dokumenter/Artikler/Montserrat%20Núñez%20CBT%20for%20CFS.pdf
17. “Canadian Clinical Case Definition.” http://www.cfids-cab.org/MESA/ccpc.html “Myalgic encephalomyelitis: International Consensus Criteria.” http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract also http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3
18. “Small Wins Matter in Advocacy Movements: Giving Voice to Patients.” L A Jason American Journal of Community Psychology 2012. 49:307-316
19. Press release for the UK CFS/ME Research Collaborative [UK CMRC]
20. “Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care.” Nacul LC, Lacerda EM, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite JCDC, Poland F, A Howe A, and Drachler ML. www.biomedcentral.com/1741-7015/9/91 see also “Estimating rates of chronic fatigue syndrome from a community-based sample: a pilot study.” Jason LA, Taylor R, Wagner L, Holden J, Ferrari JR, Plioplys AV, Plioplys S, Lipkin D, Papernik M. Am J Community Psychol. 1995 Aug;23(4):557-68.
21. Press release for the UK CFS/ME Research Collaborative [UK CMRC] http:// www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/CMRC%20launch%20media%20statement.pdf accessed on 17-08-2013.
22. Northern CFS/ME clinical Network Annual Report 2012-13 available from http:// www.cfsmenorth.nhs.uk
23. “Problems with the New CDC CFS Prevalence Estimates” Leonard Jason http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx
24. Northern CFS/ME Clinical Network Annual Report. 2012/13 http://www.cfsmenorth.nhs.uk/resources-and-downloads
25. Action for ME. “Statement of Strategic Intent.” 2013
26. “Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/MS) is a cause of school absence: surveillance outcomes from school- based clinics.” Crawley EM, Emond AM, Sterne JAC. BMJ Open (2011)
28. “Review of the first three years of the mental health research function at the Science Media Centre.” http://www.sciencemediacentre.org/wp-content/uploads/2013/03/Review-of-the-first-three-years-of-the-mental-health-research-function-at-the-Science-Media-Centre.pdf
29. “Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome.” Snell CR, Stevens SR, Davenport TE, Van Ness JM. Phys Ther. 2013 Jun 27. http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.abstract
30. ME Research UK. ‘Breakthrough’ Spring 2013 page 15. “But what about the 85% of patients who did not derive this additional benefit from the therapies, or the 90% or more of patients who had not recovered from ME/CFS after 12 months of basic care?”
33. http://xa.yimg.com/kq/groups/86982676/2146474059/name/You+are+killing+me+19-6-13.pdf By Rebecca Hanson Chairman of ME Association, Denmark
34. “What is Wrong with ME – A Case of Childhood Myalgic Encephalomyelitis: The Illness and the Controversy.” Merryn Fergusson 2012
35. “Causes of death among patients with chronic fatigue syndrome.” Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. Health Care Women Int. 2006 Aug;27(7):615-26.
36. “Emily” by Jane Collingridge 25% Group website download. http://www.25megroup.org/campaigning_Severe_ME_Day.html
37. “Discriminative Validity of Metabolic and Workload Measurements to Identify Individuals With Chronic Fatigue Syndrome.” Snell CR, Stevens SR, Davenport TE, Van Ness JM. Phys Ther. 2013 Jun 27.
38. “Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging.” Hollingsworth KG, Hodgson T, Macgowan GA, Blamire AM, Newton JLP
39. “Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” E W Brenu, M L van Driel, D R Staines, K J Ashton, Sa B Ramos, J Keane, N G Klimas and S M Marshall-Gradisnik
see also “Natural killer cells in patients with severe chronic fatigue syndrome” E. W. Brenu, S. L. Hardcastle, G. M. Atkinson, M. L. van Driel, S. Kreijkamp-Kaspers, K. J. Ashton, D. R. Staines, S. M. Marshall-Gradisnik
40. Stanford Medical School ME/CFS Initiative http://mecfs.stanford.edu