Hidden from Sight: Why the complexity of ME/CFS needs to be recognised by policy makers

An estimated 260,000 people in the UK are living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); this neurological condition has been described as ‘a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients’ (Institute of Medicine, 2015). Despite this, there remains a lack of clarity about the diagnosis and treatment of ME/CFS. The authors of this paper refer to ME/CFS but recognise that other terms (for example systemic exertion intolerance disease, chronic fatigue immunity deficiency syndrome, and post-viral fatigue syndrome) are used to describe this neurological condition, and for some people these are preferred names. This paper adopts the definition of ME/CFS as a neurological condition of unknown origin as defined by the World Health Organisation and accepted by the UK Department of Health (WHO, n.d.).