Myalgic encephalomyelitis/chronic fatigue syndrome and the biopsychosocial model: a review of patient harm and distress in the medical encounter

Abstract

Objective: Despite the growing evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), there has been a strong impetus to tackle the illness utilizing a biopsychosocial model. However, many sufferers of this disabling condition report distress and dissatisfaction following medical encounters. This review seeks to account for this discord.

Methods: A narrative review methodology is employed to synthesize the evidence for potential iatrogenesis.

Results: We identify seven potential modalities of iatrogenesis or harm reported by patients:

1. difficulties in reaching an acceptable diagnosis;

2. misdiagnosis, including of other medical and psychological conditions;

3. difficulties in accessing the sick role, medical care and social support;

4. high levels of patient dissatisfaction with the quality of medical care;

5. negative responses to controversial therapies (cognitive behavioral therapy and graded exercise therapy);

6. challenges to the patient narrative and experience;

7. psychological harm (individual and collective distress).

Conclusion: The biopsychosocial framework currently applied to ME/CFS is too narrow in focus and fails to adequately incorporate the patient narrative. Misdiagnosis, conflict, and harm are observable outcomes where doctors’ and patients’ perspectives remain incongruent. Biopsychosocial practices should be scrutinized for potential harms. Clinicians should consider adopting alternative patient-centred approaches.

Implications for rehabilitation

• Patients with ME/CFS may report or experience one or more of the modalities of harms and distress identified in this review.

• It is important health and rehabilitation professionals seek to avoid and minimize harms when treating or assisting ME/CFS patients.

• There are conflicting models of ME/CFS; we highlight two divergent models, a biopsychosocial model and a biomedical model that is preferred by patients.

• The ‘biopsychosocial framework’ applied in clinical practice promotes treatments such as cognitive behavioral therapy and exercise therapy, however, the evidence for their success is contested and many patients reject the notion their illness is perpetuated by dysfunctional beliefs, personality traits, or behaviors.

• Health professionals may avoid conflict and harm causation in ME/CFS by adopting more concordant ‘patient-centred’ approaches that give greater prominence to the patient narrative and experience of illness.

Keywords:

• Chronic fatigue syndrome
• biopsychosocial model
• harm
• iatrogenesis
• treatment
• doctor–patient relationship

Disclosure statement

Dr. Geraghty has received a grant from the UK ME Association to study patients’ experiences of treatments.