Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?

THE POTENTIAL FOR IATROGENESIS

GPs are increasingly encouraged to apply biopsychosocial principles in the clinical assessment of patients with medically unexplained symptoms, particularly CFS.^3,4 There is a general argument put forward in the BPS literature that patients with CFS have higher rates of depression and anxiety, are combative, and seek unnecessary investigations in an effort to maintain sick role status and avail of social benefits.³ GPs are encouraged to challenge or reframe unexplained physical symptoms and to focus attention on issues such as potential somatisation.³ Patients calling for enhanced medical investigation are to be judged as seeking unnecessary tests and perhaps unnecessarily availing of scarce resources.³ Raine and colleagues found that GPs often negatively stereotype patients with CFS as ‘problematic’ or ‘hypochondriacs’, with a view that these patients are not suffering from clear pathological illness, but are patients with complex psychological and social problems.⁵ However, is this narrative correct? There is increasing scientific evidence that confirms a range of physiological abnormalities in CFS. In 2011, a panel of experts published an International Consensus Criteria for CFS that promoted a neuro-immune model, rather than a psychogenic model, and in 2015 the US Institute of Medicine (IOM) suggested renaming CFS ‘Systemic Exertion Intolerance Disease’ (SEID), taking note of the multiple physical complaints patients endure.⁶ In contrast, GPs in the UK and elsewhere are encouraged to apply a biopsychosocial approach to CFS, including referring patients for psychological assessment and treatment within specialist centres.^3,4 The BPS framework for CFS proposes that patients’ abnormal psychopathology (essentially somatisation) may be treated with cognitive behavioural therapy (CBT) to alter patients’ ‘illness beliefs’, and graded exercise therapy (GET) to change ‘fear avoidance behaviours’.³ However, the 2015 IOM report stated that the symptoms most CFS patients present with — fatigue, pain, cognitive disturbances, or orthostatic intolerance — are unlikely to be ‘dysfunctional illness beliefs’.⁶

The biopsychosocial framework is contested by CFS patient advocacy groups, with claims that the BPS model is biased to the ‘psychological’, including reliance on CBT and GET. The evidence for the success of psychotherapies in CFS treatment is mixed. A 2011 psychiatry-led randomised control trial of CBT and GET for CFS reported a 22% improvement in subjective outcomes (wellbeing). However, this was not mirrored by objective measures of improvement (physical functioning), and at follow-up return to employment did not increase, healthcare usage remained the same, and patients reported a similar level of social welfare benefits.⁷ Although CBT and GET may help some patients, these treatments are not universally welcomed by all patients with CFS and there is some evidence that graded exercise may exacerbate symptoms.⁸ In a 2010 ME Association survey of 4217 members, 57% of responders reported graded exercise therapy as being unacceptable as a treatment.⁹ Other patient surveys report similar findings of patient dissatisfaction and distress following engagement with CBT or GET.¹⁰ In addition, a study of referrals to CFS clinics found that 37% were rejected as inappropriate and 61% had a likely alternative diagnosis.¹¹ For patients assessed in-clinic, 43% had alternative medical/psychiatric diagnoses, commonly sleep disorders or depressive illness.¹¹ In a separate study, two-thirds of patients with CFS referred to CFS clinics reported being dissatisfied with the quality of medical care they received.¹² Dissatisfaction was associated with delays and disputes over diagnosis, rejection of a psychiatric diagnosis, as well as doctors being dismissive, sceptical, and lacking in knowledge about the condition.¹²

Within the BPS framework, GPs may be inappropriately encouraged to view physical symptoms, such as pain, as being ‘somatised’,³ rather than complaints that require intervention, such as analgesia or referral to a pain clinic. If CFS patients perceive that GPs do not view their symptoms as ‘legitimate’ and ‘physical’ (that is, aberrations), patients may withdraw from seeking medical support. There is some concern that, if a patient with CFS rejects the BPS rationale for the illness and/or interventions of CBT/GET, this may be viewed negatively by a GP.⁵ In a patient advocacy group survey, 22% of CFS sufferers reported that they received no medical care, while the average rating given by those who did receive care was just 24%.⁹ Across a number of studies, sufferers of CFS reported doctors being hostile and dismissive, leaving many patients feeling ‘stigmatised’ and ‘marginalised’.^5,6,9–12 Low levels of satisfaction around provision of care is a concern, as CFS is often a debilitating condition that greatly impacts on patients’ quality of life, leaving many vulnerable to secondary depression and suicide.⁶