Research Priorities for LMIC Settings

Achievement: ME/CFS Meets the Definition of a Neglected Disease in Global Health

Arron et al. (2024) argue that ME/CFS satisfies criteria for a neglected disease: it imposes severe morbidity (EQ-5D scores ~0.40–0.55, worse than MS and stroke), its biological mechanisms are understudied, and its research is concentrated in high-income countries — one of the few African research contributions is the Pretorius group’s microclot work from South Africa (Arron2024neglectedDisease?) (Vester2026burdenOfDisease?). The National Academies’ 2024 workshop on infection-associated chronic illnesses identified cross-disease mechanisms (immune dysregulation, autonomic dysfunction, neuroinflammation) and called for common research frameworks, but LMIC perspectives were largely absent from the workshop (NationalAcademies2024researchAgenda?).

(Certainty: 0.55 — the neglected-disease argument is structural. The disease-burden data are from scoping review (Vester 2026). The LMIC evidence gap is documented by its absence — zero non-high-income-country burden estimates in the largest available scoping review.)

Consequence: If ME/CFS is a neglected disease, the research agenda should follow the neglected-disease model: fund surveillance studies in LMIC settings, develop culturally adapted diagnostic tools, and build research capacity in the countries with the highest infectious-disease burden. Current global ME/CFS research funding flows almost exclusively to high-income countries. Severity applicability: all — neglect affects all severity levels.

Falsifiable prediction: If formal application of the WHO neglected disease criteria framework finds ME/CFS fails ≥2 of 5 core criteria (no disease-modifying treatment exists; no unique epidemiological feature distinguishing it from other chronic conditions; no mass-drug-administration delivery model possible; concentrated in populations with identifiable shared environmental risk; already adequately funded relative to burden), the neglected-disease framing is invalid as a policy instrument — ME/CFS is neglected in the colloquial sense but does not meet the formal NTD criteria that unlock specific funding and advocacy mechanisms.

Open Question: What Would a Global ME/CFS Surveillance System Look Like?

No WHO global initiative exists for ME/CFS. The disease lacks a disability weight in the Global Burden of Disease study. No international surveillance system tracks post-infectious fatigue incidence following outbreaks of dengue, chikungunya, or COVID-19 in LMICs. The infrastructure for global ME/CFS surveillance does not exist.

The Bangladesh RCT protocol provides a small-scale model of what is possible: an investigator-initiated trial in a South Asian LMIC, testing accessible interventions against a standardized outcome (Sarker2024bangladeshRCTprotocol?). Scaled up, this model — investigator-initiated surveillance embedded in infectious-disease follow-up — could generate the first systematic global prevalence data. The National Academies IACI workshop framework provides a conceptual platform, but its implementation would require funding and institutional commitment not yet present.

(Certainty: 0.40 — the surveillance-gap argument is structural. The Bangladesh protocol is a protocol, not data. The IACI framework is a workshop, not a funded program.)

Consequence: Until a surveillance system exists, every assertion about global ME/CFS prevalence is an extrapolation. The 17–24 million global prevalence figure cited in advocacy documents is a back-of-the-envelope calculation — multiply high-income-country prevalence by world population — that assumes uniform prevalence across all settings. It may be right. It may be wrong. Without data, no one knows. Severity applicability: all.