"Those who died are the ones that are cured". Walking the political tightrope of Nodding Syndrome in northern Uganda: Emerging challenges for research and policy.

Background Nodding Syndrome was first reported from Tanzania in the 1960s but appeared as an epidemic in Northern Uganda in the 1990s during the LRA civil war. It is characterized by repetitive head nodding, often followed by other types of seizures, developmental retardation and growth faltering with onset occurring in children aged 5-15 years. More than 50 years after the first reports, the aetiology remains unknown and there is still no cure. The recent hypothesis that Nodding Syndrome is caused by onchocerciasis also increases the relevance of onchocerciasis control. Northern Uganda, with its unique socio-political history, adds challenges to the prevention and treatment for Nodding Syndrome. This article aims to show how and why Nodding Syndrome has been politicised in Uganda; how this politicisation has affected health interventions including research and dissemination; and, the possible implications this can have for disease prevention and treatment. Methodology Ethnographic research methods were used triangulating in-depth interviews, focus group discussions, informal conversations and participant observation, for an understanding of the various stakeholders' perceptions of Nodding Syndrome and how these perceptions impact future interventions for prevention, treatment and disease control. Principal findings Distrust towards the government was a sentiment that had developed in Northern Uganda over several decades of war and was particularly linked to the political control and ethnic divisions between the north and south. This coincided with the sudden appearance of Nodding Syndrome, an unknown epidemic disease of which the cause could not be clearly identified and optimal treatment had not clearly been established. Additionally, the dissemination of the inconclusive results of research conducted in the area lacked sufficient community involvement which further fueled this political distrust. Disease perceptions revolved around rumours that the entire Acholi ethnic group of the north would be annihilated, or that international researchers were making money by stealing study samples. This discouraged some community members from participating in research or from accepting the mass drug administration of ivermectin for prevention and treatment of onchocerciasis. Such rumour and distrust led to suspicions concerning the integrity of the disseminated results, which may negatively impact future disease management and control interventions. Conclusions and recommendations Trust must be built up gradually through transparency and by de-politicising interventions. This can be done by engaging the community at regular intervals during research and data collection and the dissemination of results in addition to involvement during service delivery for prevention and treatment. Maintaining a regular feedback loop with the community will help control rumours, build trust, and improve the preparations for adequate dissemination. Author summary Nodding Syndrome, a form of epilepsy that occurs in onchocerciasis-endemic areas has affected about 3000 children in Northern Uganda where the epidemic emerged at the time of the civil war. Although an association with onchocerciasis has been established, the disease etiology has not yet been identified. In conjunction with the area's history of war, political conflict and ethnic divides, many affected people were suspicious of government health interventions and scientific studies. Furthermore, ambiguities around the disease etiology leaves room for several interpretations, which in addition to distrust leads to rumours, that may hinder future interventions. In view of improving adherence to health interventions, this article explains the socio-political nature of Nodding Syndrome in Northern Uganda. We show how and why this disease has been politicised in Uganda; how this politicisation has affected research and dissemination; and, the implications this has for disease control. The insights presented will be critical for reducing resistance to research, to treatment and to the dissemination of knowledge which is necessary for the prevention and control of Nodding Syndrome and onchocerciasis in Northern Uganda.