Cost-Effectiveness: An Evidence Vacuum
Cochrane et al. (2021) conducted the first and only systematic review of economic evaluations in ME/CFS and found six studies β all based on pre-2021 CBT/GET intervention models, most published before the NICE 2021 guideline reversal that withdrew the GET recommendation (Cochrane et al. 2021). None evaluated the cost-effectiveness of modern energy-management-based care, specialist ME/CFS clinic models, diagnostic pathways, or pharmacological interventions. After the 2021 NICE reversal, the pre-2021 cost-effectiveness evidence is not just thin β its clinical basis (GET as recommended care) is obsolete. A 2024 bibliometric analysis confirmed the field remains tiny and fragmented, with only 13.8% of health-economics publications on ME/CFS involving international collaboration (Wan et al. 2024).
Consequence: Every claim in this chapter about the economic case for diagnosis, treatment, or research funding rests on burden documentation, not on cost-effectiveness evidence. The distinction is important. A burden study tells you the disease is expensive. A cost-effectiveness study tells you whether spending money on a specific intervention reduces that expense. The first exists for ME/CFS. The second does not β for any intervention. This is the most consequential evidence gap in the chapter, and it flows directly from the research underfunding documented in The Burden-to-Funding Ratio. You cannot measure cost-effectiveness without first developing interventions to evaluate. (Certainty: 0.75 β confirmed by Cochrane 2021 systematic review (Cochrane et al. 2021) and Wan 2024 bibliometric analysis (Wan et al. 2024); absence of post-NICE-2021 cost-effectiveness evidence is a documented finding, not an assumption.) Severity applicability: the cost-effectiveness gap affects evidence-based policy for all severity levels.