Journal of IiMER June 2024 Findings from the European ME Alliance PAN-European ME PATIENT Survey On World Health day 2024, the long-awaited findings of the European ME Alliance (EMEA) Pan-European ME Patient Survey were unveiled, painting a distressing picture of neglect and suffering endured by millions across Europe. The report - EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences - was the result of excellent work by the authors, Arild Angelsen and Trude Schei. Some of the items from the report, authored by Arild and Trude, are shown below. The report is available in full from this link - https://europeanmealliance.org/documents/emeaeusurvey/EMEAMEsurveyreport2024.pdf EMEA Pan-European ME Patient Survey Key Messages 'ME/CFS is a serious and debilitating disease ' '... profound disability levels and unmet needs among European ME/CFS patients' ' underscore the urgent priority for healthcare systems to recognise ME/CFS as a serious physical illness and provide better medical care, financial support, and social services' 'Keeping the activity level within the energy envelope (pacing) is the most helpful strategy ' 'Activity-based therapies do more harm than good' ' Almost half of survey respondents report a deteriorating course of illness ' ' Early diagnosis, activity management (pacing) and avoidance of over-exertion are key to preventing progression to severe disease ' ' Biopsychosocial (BPS) model - a failed and harmful approach to ME/CFS ' ' Therapies involving fixed increases in activity tend to worsen symptoms and risk a deteriorating course of the illness, rather than leading to improvement ' 'Access to medical care and social support varies across Europe, with different approaches taken by national health authorities impacting the course of illness and disease outcomes ' 'The health care system fails ME/CFS patients – and that has serious consequences ' Invest in ME Research Page 11 of 32
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