ME Awareness Day 2024: Global voice for ME

This ME Awareness Day, we wanted to highlight the pivotal role of global collaboration in driving ME/CFS research forward, with a particular focus on the transformative impact of initiatives like the UK ME/CFS Biobank (UKMEB). 

Since 2011, the CureME team established the UK ME/CFS Biobank — the first ME/CFS-specific biobank in Europe and one of the first in the world. The technical rigour of the UKMEB’s protocols ensures the reliability and validity of the samples, setting a gold standard for biobanking practices worldwide. As such, the UKMEB has served as a model for other biobanks. The biobank has collected over 30,000 aliquots of blood from participants with ME/CFS and multiple sclerosis, as well as healthy controls. Each of these samples represents the efforts of individuals to undertake a clinical assessment, complete detailed questionnaires, and donate significant amounts of blood for storage and distribution. 

But where do these samples go? 

Many UKMEB samples have been used by our team for biomedical research into ME/CFS immunology, and virology (including work on NK and T cells and cytokine profiles), resulting in a number of peer-reviewed, data-driven publications. In addition, thousands of samples have made their way across the globe to eminent ME/CFS researchers, enhancing the body of knowledge around ME/CFS. 

The UKMEB provides human tissue samples to biomedical researchers internationally who are seeking to determine a biomarkers for ME/CFS. As of May 2024, thousands of samples have been shared with research groups in Australia, Brazil, Canada, Germany, Israel, Spain and the USA. These figures underscore the far-reaching impact of the UKMEB, transcending geographical boundaries and creating a global community of researchers who are determined to improve recognition, diagnosis and treatment of ME/CFS. 

Without the participation of people with ME/CFS, this research would not be possible. Despite the debilitating nature of their condition, hundreds of people with ME/CFS have taken part in studies and donated samples to the UKMEB . They are the true custodians of this research, making their voices heard across the globe.