The cost of stigma: Stigmatisation of ME/CFS and Post-COVID and its impact on the quality and cost of health care (StiMECO)

Project description

After a SARS-CoV-2 infection, some people continue to suffer from severe health problems for weeks, months, or even years. The most severe form of post-COVID is ME/CFS, which can also occur as a result of other infections. Many people with ME/CFS and post-COVID syndrome (PCS) experience stigma in their daily lives at work, among friends, or in healthcare settings. This stigma impairs the quality of life and self-acceptance of those affected and negatively impacts the quality and costs of healthcare. The effects of this stigma have not been sufficiently investigated to be able to develop measures to reduce stigma and promote healthcare.

The objectives of the project are to develop a comprehensive understanding of the impact of stigma on the medical care of people with ME/CFS and PCS and to identify potential factors that cause stigma. To improve medical care, strategies to reduce stigma will be developed. This will involve conducting literature reviews and qualitative interviews with those affected, their families, and healthcare providers, as well as quantitative surveys among these groups and the general population. Subsequently, the health economic impact of stigma on healthcare utilisation and direct and indirect costs will be estimated. A panel of experts, with the involvement of those affected, will develop strategies for measures to reduce stigma.

The results of StiMECO are intended to contribute to improving healthcare for people with ME/CFS and PCS. Reducing stigma can lead to better integration of those affected into healthcare and better consideration of their needs. Furthermore, the project aims to contribute to reducing healthcare costs.

Description adapted from project website: see link above.