Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. CFS/ME places a substantial burden on people with the condition, their families and careers, and hence on society.
Many different potential aetiologies for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3).
CFS/ME comprises a range of symptoms that includes fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain. A person’s symptoms may fluctuate in intensity and severity, and there is also great variability in the symptoms different people experience. CFS/ME is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity. This raises especially complex issues in adults and children with severe CFS/ME.
CFS/ME, like other chronic conditions for which the causes and disease processes are not yet fully understood, poses significant problems for healthcare professionals. It can cause profound, prolonged illness and disability, which has a substantial impact on people with CFS/ME and their carers. Uncertainties about diagnosis and management, and a lack of clinical guidance for healthcare professionals, have exacerbated this impact.
Currently, the aetiology of CFS/ME remains unknown, although several factors have been suggested, including immunological, genetic, viral, neuroendocrine and psychological. Indeed, there is growing evidence that the condition is heterogeneous, and may not have a single or simple aetiology. It may be best regarded as a spectrum of illness that is triggered by a variety of factors in people who have an underlying predisposition.
The clinical practice guidelines on chronic fatigue syndrome developed by the Royal Australian College of Physicians define CFS as ‘a descriptive term used to define a recognisable pattern of symptoms that cannot be attributed to any alternative condition’.6 There is ongoing debate about the most appropriate diagnostic criteria to be applied.
Because of the potential educational and social disruption, it has been generally agreed that for children and adolescents 6 months of fatigue before diagnosis is too long. For this reason fatigue durations of 8 weeks and 3 months have been proposed. The Royal College of Paediatrics and Child Health guideline stated that a patient who is referred with debilitating fatigue for assessment should be given an initial opinion of ‘generalised fatigue’.
At present, there are no physical signs that identify CFS/ME specifically. In addition, there are no diagnostic laboratory tests or other diagnostic criteria that can, as yet, confirm a diagnosis of CFS/ME, although research is ongoing. The diagnosis of CFS/ME is therefore made on the basis of a recognisable pattern of characteristic symptoms, and on the exclusion of other known causes.
A positive diagnosis of CFS/ME should be made after other known causes for the symptoms have been excluded and where the symptoms are causing functional impairment.
Management of CFS/ME
Cognitive behavioural therapy (CBT)
CBT is a specific psychological therapy, based on underlying theoretical principles, with a broad evidence base across a variety of conditions. CBT is an evidence-based therapy for CFS/ME. It is a collaborative approach that aims to reduce the levels of symptoms, disability and distress associated with CFS/ME. CBT or psychological approaches to CFS/ME do not imply that symptoms are psychological, ‘made up’ or in the patient’s head. CBT is used as part of the overall management for many conditions, including cardiac rehabilitation, diabetes and chronic pain.
Graded exercise therapy (GET)
GET is an evidence-based professionally mediated approach to CFS/ME involving appropriate physical assessment, mutually negotiated and meaningful goal-setting and education. An achievable baseline of physical activity is agreed, followed by individually tailored and planned increases in the duration of exercise. This is followed in turn by an increase in intensity when the patient is able, taking into account their preferences and objectives, current activity patterns, sleep, setbacks/relapses and other factors, with the objective of improving symptoms and functioning.
Relaxation is described as a state characterized by a reduction in physical and mental arousal, leading to feelings of peace, and release from tension and anxiety. Achieving it often requires practice but it can be a helpful strategy for people with CFS/ME.
Relaxation training and memory aids such as organizers and written resource manuals may also be helpful for addressing cognitive problems.
Management of setbacks/relapses
People with CFS/ME have variations in the severity of their symptoms and will experience setbacks/relapses or transient increases in fatigue and other symptoms. These setbacks/relapses can vary significantly in their duration and severity, being anything from a slight reduction in function through to severe symptoms resulting in significant disability.
Setbacks/relapses are to be expected as part of the normal course of CFS/ME. With effective management, the frequency, severity and duration of setbacks/relapses should reduce.
Setbacks/relapses appear to be caused by different things; triggers can include, for example, sleep disturbance, over-activity, stress or an active infection (such as a common cold). However, it may not always be possible to identify a cause. Advice on managing setbacks/relapses may vary according to the cause.