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Hidden from Sight: Why the complexity of ME/CFS needs to be recognised by policy makers, 2021, Űstűnkaya & Machin

Discussion in 'ME/CFS research' started by ola_cohn, Dec 5, 2021.

  1. ola_cohn

    ola_cohn Established Member (Voting Rights)

    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.).

    The House of Commons debate which took place on 21 June 2018 will be taken as a significant starting point for the discussion on ME treatment and research; this is regarded as a key moment in the public debate and recognition of the condition stating that ME is ‘a hidden illness’ (Hansard HC Deb., 21 June 2018d).

    Historically, there has been an emphasis on ME/CFS as being psychological in nature and this continues to exert a damaging influence on key areas of public policy. This paper considers the hidden nature of ME/CFS in relation to two particular issues: funding for research and social security policy. It is argued that medical research into the condition is impeded by a lack of adequate government funding. This is identified as critical in achieving a comprehensive health regime for sufferers. Social security is an important area of concern for ME/CFS suffers and a key policy area; correct entitlement to social security benefits is crucial for people with disabilities but appropriate access to welfare benefits is often obstructed by misunderstanding of the condition. It is argued that in both of these areas, a greater understanding of the impact of ME/CFS is required to allow policy makers and practitioners to more appropriately meet the needs of people living with the condition.

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