A Poorly Understood Condition: Disability Living Allowance and People with CFS/ME

Abstract

This paper questions the adequacy of administrative responses to poorly understood disabling conditions in the UK. An illustrative case study, the administration of the Disability Living Allowance (DLA) to people with chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME), is examined. Controversies surrounding CFS/ME and institutional responses to the condition are summarized. The history and purposes of DLA are outlined, and research evaluating its administration and impact is reviewed. Quantitative data from the DSS are combined with qualitative data obtained from interviews with claimants and non‐claimants of DLA with CFS/ME and with benefits advisers. Additional data from a national survey of people with CFS/ME are incorporated into the analysis. The findings show how the adjudication of DLA is particularly problematic in relation to people with CFS/ME. Decisions are likely to be based on inadequate evidence. These and other relevant findings are discussed in the context of the stigma attached to CFS/ME and other poorly understood disabling conditions, and socio–legal research and theory.