In a series of posts I review the Wessely School’s influence on science, treatment and – most importantly – ME/CFS patient experience. In previous posts I outlined here the likely biological basis of ME/CFS and here treatment harms to patients. This post introduces the Wessely School’s approach to ME/CFS and medically unexplained symptoms.
What is ME/CFS?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating
multisystemic disease of unknown aetiology, affecting thousands of individuals worldwide. The severity of symptoms can range from mild to severe with incidence peaks between age 10-19 years and 30-39 years. Women are more often affected than men in a 3:1 ratio. ME/CFS has been described as an “incurable, invisible contested and unsupported illness” (Farrell Delaney, 2020). The report by the Institute of Medicine (IOM) of the Academy of Sciences in the USA in 2015 concluded that ME/CFS is a physiological/medical, not a psychiatric illness (Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2015; Clayton, 2015). The International Consensus Criteria (Carruthers et al., 2011), the Centers for Disease Control and Prevention (2018), the ICD-10, and the ICD-11 (World Health Organisation, 2018), all classify ME/CFS as a neurological disease.
In spite of evidence that the disease is associated with marked biological changes (Loebel et al., 2016, Schreiner et al., 2020; Sotzny et al., 2018; van Campen et al., 2020) and what appears to be a breakdown in homeostasis (Marks, 2021), the disease is often perceived by doctors and nurses as having a psychological or psychosomatic origin that is ‘all in the head’ (Åsbring & Närvänen, 2002; Dickson et al., 2007; Ware, 1992). This ‘all in the head’ perception causes stigmatization as an extra burden for patients with ME/CFS.
Paediatrician Ola Didrik Saugstad has stated: “A reorientation of the understanding and attitude to ME patients occurs worldwide. ME patients, especially the worse cases, suffer enormously. Among them, the paediatric patients are most vulnerable, representing a special challenge due to the occurrence in the midst of somatic growth and emotional development. We are waiting for a biomarker of this disease, and some are in the pipeline. And even more, we are hoping for an effective treatment. Still, it is already now time for the medical profession as well as the whole society to repent, as these patients have previously often not been treated with the respect and care they need and deserve” (Saugstad, 2020).
In addition to the stigma and stress burdens, the most used therapies for pwME/CFS based on the psychosocial model have caused significant harms to patients that are well documented in the literature.
Owing to the absence of an established biomarker, current diagnostic methods proceed by a process of eliminating other diseases with similar symptoms and there is no universally agreed or empirically derived definition of ME/CFS. The illness was first described in the mid-1980s when almost nothing was known about its underlying biology. Some clinicians explained to patients that “there is nothing wrong.”
Post-exertional malaise (PEM) is a cardinal symptom of ME/CFS reported by many, but not all, patients (Jason, Evans, So, Scott & Brown, 2015; VanNess, Snell & Stevens, 2007; McGregor, Armstrong, Lewis & Gooley, 2019).). In the International Classificatory System, PEM is a mandatory feature of the condition (Carruthers et al., 2003, 2011). Another commonly reported feature of the illness is its tendency to wax and wane (Friedman, Bateman, Bested, & Nahle, 2019; Morris, Anderson, Galecki, Berk & Maes, 2013; Morris & Maes, 2014). The onset and duration of ME/CFS have been debated with some researchers suggesting a sudden onset and others a gradual onset. An interview study revealed descriptions of ME/CFS onset experiences that were both varied and complex indicating that onset can be sudden or gradual in different cases (Evans & Jason, 2018).
For more than thirty years
a group of psychiatrists and psychologists at King’s College London and the Institute of Psychiatry together with a large group of collaborators has advanced a psychosomatic approach to ME/CFS. This group is given the sobriquet ‘Wessely School’ in honour of its leading representative, Professor Sir Simon Wessely. Simon Wessely has been the UK’s leading authority in establishing healthcare for patients with ME/CFS and MUS. According to the Wessely School, ME/CFS is neither a neurological nor an immunological condition but a psychosomatic condition, a functional illness with a primarily psychological origin. For the Wessely School, ME/CFS belongs in a spectrum of medically unexplained symptoms (MUS) including irritable bowel syndrome, non-ulcer dyspepsia, premenstrual syndrome, chronic pelvic pain, fibromyalgia, atypical or non-cardiac chest pain, hyperventilation syndrome, tension headache, atypical facial pain, globus syndrome and multiple chemical sensitivity (Wessely, Nimnuan & Sharpe, 1999). Early in the piece these authors opined that “the existing definitions of these syndromes in terms of specific symptoms is of limited value”.
The psychologists and psychiatrists within the Wessely School favour the
Cognitive Behaviour Therapy (CBT) Model
of emotional distress as proposed by Aaron T Beck (1976). The model distinguishes between developmental predispositions and precipitants of distress, and perpetuating cognitive, behavioural, affective and physiological factors, the so-called “three Ps”: predisposing, precipitating and perpetuating factors (Beck, 1976). This approach is not dissimilar to Hans Eysenck’s view that personality and feelings of hopelessness and helplessness are causal determinants of diseases such as cancer and coronary heart disease (Eysenck, 1991, Figure 1).
In line with Beck’s and Eysenck’s approach, the Wessely School has promoted what it has called a “broadly conceptualized cognitive behavioural model of MUS suggest(ing) a novel and plausible mechanism of symptom generation.” In a nutshell, fears and beliefs about the harmful effects of activity are related to poorer outcomes in ME/CFS (Deary, Chalder & Sharpe, 2007).
The school holds the hypothesis that the ‘three Ps’ inform behaviour such as activity avoidance and the belief that the illness has an organic basis, which, in turn, are said to affect the patient’s physiology and symptoms, providing a vicious circle of symptom maintenance irrespective of symptom type.
Some of the main influencers on the school have been Aaron T Beck, George Engel, Hans J Eysenck and Isaac M Marks. Eysenck’s theory assigns to cortisol and immune deficiency a mediating role between feelings of hopelessness and helplessness and development of the disease (see Figure 1).
Eysenck: Psychosocial -> Biological -> Disease
Figure 1. Hans Eysenck’s theory of personality and stress, dysfunctional feelings, as the causes of cancer. From Eysenck (1991).
Wessely’s theory attributes causal status to fear, behaviour and de-conditioning (Figure 2). Eysenck’s theory and Wessely’s theory share a strongly biopsychosocial orientation but with a difference in the sequence of the three key elements:
Wessely: Biological -> Psychosocial -> Disease
Figure 2. The Wessely School’s theory of the aetiology of CFS. From Harvey and Wessely, 2009.
Treatment of ME/CFS in the Wessely School’s approach focuses on the alleged ‘self-perpetuating cycle’ of inactivity that is assumed to disrupt the “self-maintaining interlock of cognitive, behavioural and physiological responses hypothesised to perpetuate the symptoms” (Deary et al. 2007, pp. 2-3; Harvey & Wessely, 2009; Figure 2).
The role of doctors in MUS is said to be similar to that of “parents of sick children. Both can reinforce unhelpful illness behaviour and symptom interpretations” (Deary et al., 2007, p. 7).
A group of investigators in Nijmegen, The Netherlands, holds a similar hypothesis that emphasizes the role of physical activity in attempting to correct the so-called ‘vicious circle’ of ME/CFS (Vercoulen et al., 1998; Wiborg, Knoop, Stulemeijer, Prins & Bleijenberg, 2010).
Influencers of the Wessely School
There have been several major influencers on the School including:
Hans J Eysenck: a leading theorist in personality theory and behaviour therapy. However, Eysenck’s publications on smoking, cancer and CHD were recently considered ‘unsafe’ in an enquiry within King’s College London.
Key members of an ‘inner circle’ are also shown in the illustration:
Trudie Chalder: Professor of Cognitive Behavioural Psychotherapy, King’s College London. Chalder has co-authored multiple publications on ME/CFS and MUS with Professor Wessely and she was one of the co-principal investigators of the PACE trial.
Mansell Aylward: Director of the Centre for Psychosocial Research, Occupational and Physician Health, Cardiff University. From 1996 to April 2005 Aylward was Chief Medical Adviser, Medical Director and Chief Scientist of the UK Department for Work and Pensions, co-funder of the PACE trial.
A larger ‘outer ring’ of collaborators work at King’s College London and at many other institutions all over the world.
The Wessely School’s Contribution
The Wessely School’s influence on the treatment of patients with ME/CFS has been huge. Some main influencers and contributors are listed in the table together with statements and publications reflecting the approach.
|INFLUENCERS AND CONTRIBUTORS||PUBLICATIONS AND PERSONNEL|
|Epictetus||“People are not disturbed by things, but by the views they take of them”.|
|James Alexander||Thought control in everyday life. (1928). Funk & Wagnalls, New York.|
|Aaron T Beck||Depression: Causes and treatment. (1967). University of Pennsylvania Press, Philadelphia.|
|Albert Ellis||A cognitive approach to behaviour therapy. (1969). Internat. J Psychother, 8, 896-900.|
|Joseph Wolpe and Arnold Lazarus||Behavior therapy techniques: A guide to the treatment of neuroses. (1966).Pergamon Press.|
|Hans J Eysenck||Personality, cancer and cardiovascular disease: A causal analysis (1985). Personality and individual differences, 6(5), 535-556.|
|Isaac M Marks||Fears, phobias, and rituals: Panic, anxiety, and their disorders. (1987).Oxford University Press.|
|George L Engel||The need for a new medical model: A challenge for biomedicine (1977). Science, 196, 129–136.|
|Harold Leventhal, D. Meyer and D. Nerenz (1980).||The common-sense model of illness danger. In: Rachman, S., editors. Medical Psychology, Vol. 2. New York: Pergamon, pp. 7–30.|
|Core Team Members at King’s College London||T Chalder, J Chilcot, P McCrone, K Goldsmith, M. Hotopf, R Moss-Morris, J Weinman, S Wessely|
|External contributors||M. Alyward (UnumProvident Centre, Cardiff), C. Bass (Oxford), G. Bleijenberg (Nijmegen), S. Borgo (Rome), K. Brurburg (Norwegian Institute of Public Health), C. Burton (Sheffield), D. L. Cox (Cumbria), E. Crawley (Bristol), V. Deary (Newcastle), L. Dennison (Southampton), R. Horne (UCL), A.L. Johnson (MRC Clinical Trials Unit, London), H. Knoop (Nijmegen), M. Loades (Bath), D.Oakley (UCL), K. Petrie (Auckland), M. Sharpe (Oxford), L. Sibelia (Rome), P. D. White (Queen Mary University of London)|
In later posts I present the scientific evidence on the Wessely School’s approach to ME/CFS and MUS.
Watch this space!