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On World ME Day, 12 May, this fundraiser aims to support the ME community by raising urgently needed research funding and public awareness through a bake sale at Central European University.
Myalgic Encephalomyelitis (ME), also known as ME/CFS, is a serious chronic neurological illness that can severely reduce quality of life. Symptoms may include profound exhaustion, cognitive dysfunction (“brain fog”), orthostatic intolerance (difficulty standing or remaining upright), and heightened sensitivity to light, sound, and other stimuli. ME can be triggered by viral infections, including COVID-19, and the number of people affected continue to rise following the global pandemic.
ME affects millions of people worldwide, including members of CEU community, where several students were forced to interrupt their studies because of the illness. Despite its prevalence and devastating impact, ME remains profoundly under-researched, with its underlying mechanisms still poorly understood and there is currently no cure and no universally affective treatment. This is due not only to a severe lack of funding, but also to epistemic injustice surrounding a disease that affects people of all backgrounds while disproportionately affecting women. Supporting the ME community and calling for greater research funding is therefore both urgently necessary and strongly aligned with the university’s mission.
SequenceME & Long Covid project by Action for M.E.
This fundraiser supports SequenceME study, a major research initiative led by Action for M.E., a UK-based nonprofit dedicated to improving the lives of people with ME through advocacy, political campaigning, and collaboration with leading researchers worldwide.
Launched in February 2026, Sequence ME builds on the groundbreaking DecodeME study, one of the largest genetic studies ever conducted on ME. While many ME studies focus on testing existing treatments, this project seeks to uncover the biological mechanisms underlying ME itself—creating essential foundations for future diagnostics and treatments. The study is conducted in partnership with the University of Edinburgh, Oxford Nanopore Technologies, and the European Bioinformatics Institute.
Early findings from DecodeME have already revealed promising insights, but further analysis is essential to translate these discoveries into clinical breakthroughs. While initial funding has been secured for the first phase, substantial additional support is still needed to realise the full potential of this large-scale, multi-year research effort.
By donating, you are helping accelerate scientific understanding of one of the world’s most neglected and debilitating illnesses, supporting millions already affected worldwide, and contributing to a future where ME is no longer overlooked.
Learn More:
On Sequence ME: https://www.actionforme.org.uk/research-campaigns/our-research-work/sequenceme-long-covid/
Epistemic injustice and ME: works of Joanne Hunt, Department of Women's and Children's Health, Uppsala University.
i.e. https://jme.bmj.com/content/early/2024/08/08/jme-2023-109837.abstract
Summery of Initial Decode ME result by the University of Edinburgh