In the recent study by Cole and Drs. Shephard, Phillips and Janmohamed, in collaboration with our MEBO Research, the emotional landscape of living with MEBO/TMAU is laid bare, revealing a world where individuals are often met with misunderstanding and social exclusion. The respondents, all navigating the challenges of TMAU in the UK, shared heart-wrenching experiences of bullying, ostracism, and a profound lack of empathy from others. The workplace (36 respondents, 90%) and social settings (35 respondents, 88%), places where support and acceptance should thrive, turned out to be the most common arenas for these painful encounters. This societal blindness to their struggle not only amplifies their emotional burden but also deepens their sense of isolation. The survey uncovers a poignant truth: living with TMAU is not just a physical battle but a relentless emotional ordeal, marked by a constant struggle for acceptance and understanding.
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The emotional turmoil doesn't end there. The study highlights a critical dilemma – to disclose or not to disclose their condition. For many, this decision is a double-edged sword. Revealing their condition might bring some level of understanding, yet it also risks further stigma and exclusion. This uncertainty breeds a unique kind of loneliness and stress, where the fear of judgment constantly weighs against the hope for empathy. The findings underscore a desperate need for a shift in societal perception and support structures. It's clear that these individuals are not just battling a metabolic disorder but are also fighting for their place in a society that often overlooks the invisible hardships they endure daily. The call for greater awareness and mental health support resonates through each response, painting a picture of a community in urgent need of empathy and a deeper understanding of their struggles.
REFERENCE
Flaherty CC, Phillips IR, Janmohamed A, Shephard EA. Living with trimethylaminuria and body and breath malodour: personal perspectives. BMC Public Health. 2024 Jan 18;24(1):222. doi: 10.1186/s12889-024-17685-w. PMID: 38238734; PMCID: PMC10797923.
See also:
Briscoe S, Martin Pintado C, Sutcliffe K, Melendez-Torres GJ, Garside R, Lawal HM, Orr N, Shaw L, Thompson Coon J. Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence. Orphanet Journal of Rare Diseases. 2025 Jun 12;20(1):303.
Briscoe S, Martin Pintado C, Garside R, Thompson Coon J, Lawal HM, Orr N, Shaw L, Melendez-Torres GJ. Evidence of health inequities across the rare disease patient care pathway: development of a toolkit using a conceptual framework. Orphanet Journal of Rare Diseases. 2026 Dec;21(1):213.
