A patient's journey with myalgic encephalomyelitis

Introduction

Myalgic encephalomyelitis (ME) presents patients and their general practitioners with the challenge of managing a life shaped by chronic debilitating illness, pain, and uncertainty. The notion that body limitations resulting from illness must be recognised is shown in the literature on chronic illness, but at the same time it is necessary to understand the social context of change and diversity within which illness is conceptualised. People give meaning to their illness and altered life course with reference to socioeconomic relations, cultural perceptions and beliefs, and their interactions with health and social care services.

Myalgic encephalomyelitis represents the conundrum of uncertainty in the diagnosis, treatment, and prognosis of the disease. Many of the symptoms that people present with could be indications for other diseases, making it difficult to diagnose. Moreover, there is still some debate about the existence of the disease as a clinical category. Current guidance focuses on the symptoms of fatigue and malaise, cognitive impairment, and pain. The patient's account in this paper was collected as part of a research study on osteoarthritis of the knee. The patient, Daphne Evans, was interviewed by BNO, but the discussion centred on myalgic encephalomyelitis because she considered this condition of primary importance. Her doctor's account was added to her own account when the paper was drafted.

Diagnosing uncertain disease

Daphne's story illustrates the syndrome of myalgic encephalomyelitis as a chronic and fluctuating illness with a profusion of symptoms that affect many parts of the body, which can result in severe muscle pain, physical and mental fatigue, problems with concentration and memory, and feeling unwell (box 1). Although health professionals increasingly take the patient's “life world” into account, indeterminate diseases highlight the tension between the biophysical and psychosocial aspects of illness.