Journal of IiMER June 2024 EMEA Commentary on Pan-European ME Patient Survey The long-awaited findings of the European ME Alliance Pan-European ME Patient Survey, initiated in 2021, have finally been unveiled, painting a distressing picture of neglect and suffering endured by millions across Europe. Drawing upon input from over 11,000 individuals, the report [' EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences'] lays bare the systemic failures and institutional neglect that have perpetuated the suffering for far too long and serves to sound the alarm to all stakeholders - including governments, healthcare providers, research agencies, policy makers, and global organisations - of the urgent need for concerted action to address the humanitarian crisis facing people with ME and their families. The report is an indictment of the status quo. Yet, by shining a spotlight on these issues, the report also seeks to catalyse meaningful dialogue and concrete steps towards redressing the injustices faced by ME patients. The stark revelations underscore the urgent need for concerted action. Key messages extracted from the report highlight the severity of the disease, with profound disability levels and unmet needs prevalent among European ME/CFS patients. Despite mounting evidence, healthcare systems continue to overlook ME/CFS as a serious physical illness, failing to provide adequate medical care, financial support, and social services. Incomprehensibly, it is not even recognised in some European countries despite it being listed under the World Health Organization’s ICD Codes, ICD-10 G93.3 and (later) ICD-11 8E49 as a neurological condition since 1969. This is a clear failing of EU healthcare provision and has resulted in the continued violation of patients’ human rights, especially to the best attainable health, a topic that EMEA is raising with the EU and WHO Europe. In response to these findings, the European ME Alliance has proposed a series of crucial actions to be undertaken. Invest in ME Research Page 17 of 32
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