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Thanks to @PPI_NUIG and @hrbireland for supporting this work on the economic impact of ME/CFS in Ireland, which highlights a range of costs for patients, informal carers, and the economy. Really nice example of patients doing research with patients, for patients. #PPI #pwme 1/n https://twitter.com/PPI_NUIG/status/1335868404398428160
In our study, ME/CFS patients described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness and understanding of the condition by healthcare professionals, as well as a lack of effective treatments. 2/n
These issues were linked to poor prognosis of the illness by patients who, as a result, faced a range of additional indirect costs. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. 3/n
Informal carers described a range of impacts, including time costs, burnout, and negative impacts on work and study. Altogether, study highlights how ME/CFS patients in Ireland have been let down by healthcare professionals, the healthcare service, and by policymakers. 4/n
Paper here: https://hrbopenresearch.org/articles/3-88/v1
