THE RISE AND FALL OF THE WESSELY SCHOOL David F Marks* Independent Researcher Arles, Bouches-du-Rhône, Provence-Alpes-Côte d'Azur, 13200, France *Address for correspondence: [email protected] Rise and Fall of the Wessely School THE RISE AND FALL OF THE WESSELY SCHOOL 2 Rise and Fall of the Wessely School ABSTRACT The Wessely School’s (WS) approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/MECFS) is critically reviewed using scientific criteria. Based on the ‘Biopsychosocial Model’, the WS proposes that patients’ dysfunctional beliefs, deconditioning and attentional biases cause illness, disrupt therapies, and lead to preventable deaths. The evidence reviewed here suggests that none of the WS hypotheses is empirically supported. The lack of robust supportive evidence, fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and unwillingness to share data all give the appearance of cargo cult science. The WS approach needs to be replaced by an evidence-based, biologically-grounded, scientific approach to MUS/MECFS. 3 Rise and Fall of the Wessely School Sickness doesn’t terrify me and death doesn’t terrify me. What terrifies me is that you can disappear because someone is telling the wrong story about you. I feel like that’s what happened to all of us who are living this. And I remember thinking that nobody’s coming to look for me because no one even knows that I went missing. Jennifer Brea, Unrest, 20171. 1. INTRODUCTION This review concerns a story filled with drama, pathos and tragedy. It is relevant to millions of seriously ill people with conditions that have no known cause or cure. Effective care for such patients is almost zero, with bed rest, hope and prayer being the only safe remedies. The drama began in Los Angeles in 1934 when an outbreak of 'epidemic neuromyasthenia' hit the news (Parish, 1978). Similar outbreaks occurred in many other places, e.g. Iceland, South Africa, Australia, Switzerland, Denmark, and London. No medical solution has yet been forthcoming and patients continue to suffer from what can be a severe, life-long condition. Their tragic story is yet to be taken seriously and is a story that must be told. This critical review is dedicated to the millions of people with MUS/MECFS all over the world. It follows a series of papers published here and in the sister-journal, the Journal of Health Psychology. In 2017, a critical analysis of the largest randomised trial of therapies for patients with MECFS appeared in the Journal of Health Psychology: a Special Issue on the PACE trial (Geraghty, 2016; D Marks, 2017; White et al., 2017). Since the JHP Special Issue, there have been changes to the clinical and scientific approach to the spectrum known as ‘medically unexplained symptoms’ (MUS)2, myalgic encephalomyelitis and chronic fatigue syndrome (MECFS). It is possible that the same psychiatric approach will be offered to patients with long-term COVID-19-related conditions, which 1 Unrest is available on YouTube at: https://youtu.be/iz6nTy-ffu0 2 I use the term ‘medically unexplained symptoms’ with reservations. The American Psychiatric Association’s DSM-5 abandoned the term ‘medically unexplained symptoms’ for non-neurological disorders in 2013. The term ‘MUS’ continues to be contentious. E M Marks and Hunter (2015) suggest ‘Persistent Physical Symptoms’ or ‘Functional Symptoms’ as alternatives. Other equivalent terms in the literature are ‘Functional Disorders’ and ‘Somatization Disorder’. The use of the MUS concept as a viable diagnostic term, the credibility of psycho- centric MUS treatment models, and the validity of evidence of their effectiveness in routine practice have been questioned in a recent JHP editorial (Scott, Crawford & Geraghty, 2021). 4 Rise and Fall of the Wessely School is showing a similar symptom profile to MECFS.3 The UK’s Office of National Statistics (2021) reported that the prevalence of long-term symptoms following COVID-19 infection on 1 April 2021 was 1.1 million people. On this estimate, the number of long-term COVID-19 cases globally could eventually be as high as one hundred million. It appears timely to review the scientific evidence concerning the psychosomatic approach to the syndromes falling under the ‘MUS/MECFS’ umbrella. This review is relevant to patients, specialists, and scholars of the history of medicine and to those concerned with the demarcation between science and pseudoscience. This review is structured as follows. First, I introduce seven criteria that are applicable to any research programmes that purports to be scientific and then a description of the ‘Biopsychosocial Model’ (BPSM) associated with the WS enterprise. Next I introduce relevant clinical issues concerning MUS/MECFS followed by an outline of the principal influencers and members of the ‘Wessely School’ (WS). I proceed with an evidence review of the WS’s scientific claims about the causes of MUS/MECFS which involve ‘dysfunctional thoughts’ (H1), deconditioning (H2) and biased attention (H3). I discuss the fundamental error of equating statistical association with causation, a prominent feature of the School’s research publications. I consider the findings on treatment harms the invalidation of patient experience in real world studies. I describe the disregard of the principles of science in the WS’s clinical trials. I examine the pseudoscientific cult of the ‘Lightning Process’ and Neurolinguistic Programming within WS research and the ‘SMILE trial’ with 100 National Health Service 12-18 year old patients. I indicate the non-scientific drivers and corporate sponsors of the WS approach. I provide an appraisal of the non-scientific aspects of the WS measured against objective criteria. Finally, I draw the review to a close with a set of conclusions. The physicist Richard Feynman coined the term ‘cargo cult science’ for the pretence of science in the absence of legitimacy (Feynman, 1974). In the South Seas during war-time, a cargo cult of islanders observed lots of airplanes landing with valued goods. After the war ended the islanders wanted the planes to continue landing and reconstructed ‘airports’ with fires beside the runway, a hut for the air traffic controller and bamboo antennas. Despite having the ‘airports’, no planes landed. Feynman’s idea of ‘cargo cult science’ refers to research that follows the form and pretence of 3 Petracek, Suskauer, Vickers, Patel, Violand, Swope & Rowe (2021). 5 Rise and Fall of the Wessely School scientific investigation yet is missing the essential component of scientific legitimacy in relying upon a strong form of confirmation bias. From the very start, it is necessary to be clear about the nature of science and the criteria that can be applied to separate a scientific from a non-scientific research programme. The practice of science and a scientific research programme can be defined using seven criteria: 1) Use of a scientific model to generate theories and hypotheses. 2) A statement of hypotheses to make falsifiable predictions registered in advance of data collection. 3) The use of controlled investigations to determine the validity of the hypotheses. 4) The use of ethical methods in the treatment of research participants who must be able to give their fully informed consent. 5) Employment of statistically appropriate procedures for the analysis of the data. 6) Making valid and logically sustainable interpretations of the data in light of the hypotheses. 7) A willingness to share data to enable independent scientists to conduct further analyses. These criteria are standard expectations of any enterprise that can be labelled ‘science’ and they are therefore helpful to bear in mind while processing the information that has been synthesised for this review. I turn to discuss the foundation of the WS approach. 1.1 Arrival of the Biopsychosocial Model. In the second half of the Twentieth Century the biomedical system had been repeatedly challenged by multiple figures in the scientific establishment and by certain patient groups. These challenges came with a call for more attention to the psychological and social aspects of health using the ‘Biopsychosocial Model’ or ‘BPSM’ (Engel, 1977, 1980). Accordingly, three domains – the ‘bio’, ‘psycho’ and ‘social’ – have been considered necessary to provide a full understanding of health, illness and health care. The BPSM has become orthodoxy both within contemporary Psychiatry (Ghaemi, 2009) and mainstream Health Psychology (Sarafino & Smith, 2014), a unique and potent happenstance in the history of the two fields. George Engel’s BPSM became a focus of controversy after the BPSM was adopted by the proponents of a cognitive-behavioural theory for illnesses known as ‘myalgic encephalomyelitis’ (ME) and ‘chronic fatigue syndrome’ (CFS). It is fair to state that the use of the BPSM as a banner for an approach to MUS/MECFS has met with unbridled resistance from people with (pw) MUS/MECFS and their advocates, the majority of whom do not consider the BPSM to be fit for 6 Rise and Fall of the Wessely School purpose. Many pwMUS/MECFS believe the illnesses are fully organic and would strongly prefer a biomedical approach that treats the biological cause(s) of the disease rather than a behavioural- cognitive one that treats only the symptoms. The absence of an established aetiology and biomedical marker means that the behavioural-cognitive approach has been the most frequent treatment option. This has been especially true in the UK where the National Institute for Health and Care Excellence (NICE, 2007) issued guidance recommending cognitive behaviour therapy (CBT) and graded exercise therapy (GET) for pwMECFS. When the BPSM first appeared in the late 1970s it was viewed as ‘renaissance medicine’ appearing more wholistic in nature compared with the traditional biomedical approach. In spite of its popular appeal, the BPSM is not a scientific model in any normal sense of the term.