Journal of IiMER June 2024 Foreword from the ‘EMEA survey of ME/CFS patients in Europe: Same disease, different approaches and experiences‘ Report In the world of Myalgic Encephalomyelitis (ME or ME/CFS), where decades of misinformation, ignorance, bias and stigma have been allowed to develop and grow without challenge, and eventually influence and then swamp healthcare systems, government policies and media prejudice, people affected by this disease have been left without moral, economic and healthcare support. The advent of social media has levelled the field somewhat, allowing patient groups to challenge the orthodox view of ME/CFS. However, the continued lack of any adequate funding for research into the disease, and no serious attempt to find the cause of the disease by national research agencies or policymakers, has led to the lack of the one essential element that is needed to change policies in government. That element is evidence. The European ME Alliance (EMEA) survey of ME/CFS patients in Europe is a first attempt by patient organisations to bring forward information that can be applied by governments in Europe, and by EU institutions, in order for them to take responsibility for addressing this high burden, under prioritised disease and provide the needed research funding, medical education of physicians, and social support for patients. The objective behind the survey was to find out whether the situation for ME/CFS patients was similar across European countries. The survey originated from the excellent work already performed by the authors of this report – Arild Angelsen and Trude Schei – and their impressive work with Norges ME-forening (Norwegian ME Association), an EMEA member, where they have previously surveyed and reported on the situation with ME/CFS in Norway and Denmark and identified similarities between the onset of ME/CFS and other factors impacting people with this disease. Building upon their work, EMEA members came together to assist in conducting this ‘first ever’ European patient survey. The results show that patients everywhere in Europe face similar stigma regarding recognition and knowledge of the disease, with huge delays in diagnosis that may take up to 12 years in some cases. With patients in Europe often being forced into taking deleterious and flawed biopsychosocial-based therapies that are still recommended by some national healthcare authorities, it may be no surprise that the report shows only 7% of patients reporting improvement over the years, with many having to face health deterioration that can last a lifetime. The survey also indicated that patients who received early diagnosis had better outcomes and were able to manage their energy use earlier by using pacing techniques to avoid over exertion and repeated ‘crashes’. The lack of educated medical professionals leads to a failure of healthcare and welfare systems to provide adequate support – the report highlights the poor level of support for this disease being experienced everywhere. Invest in ME Research Page 12 of 32
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