Journal of IiMER June 2024 The results compiled here by Arild Angelsen and Trude Schei demonstrate that it is important that information about this disease is also to be collected from patients – to document their ‘lived experience’ as is the currently popular buzzword. The survey provides evidence. The survey results should be a call for action. Investing in ME research will greatly benefit not only the patients, but also the healthcare and social systems as, currently, it takes patients years of medical visits to receive a diagnosis or receive any symptom relief, and their inability to workplaces heavy strains on national insurance and welfare systems. It is important to note that the research community has the interest and the potential to tackle this disease. EMEA member organisations have established a network of experts – researchers and clinicians, namely the European ME Clinicians Council (EMECC), the European ME Research Group (EMERG), as well as an Early Career Researcher Network (Young EMERG). These are well connected internationally with world-renowned research institutes and already have the capability to coordinate the necessary research that can lead to a correct diagnosis and appropriate treatments for ME/CFS patients. In addition, EMEA supports the annual Invest in ME Research International ME Conference (IIMEC) which brings together world renowned researchers and also includes a 'patient day' which is open to the public where the latest advances related to ME/CFS are presented in a language patients can understand. Patient organisations play a key role in providing information, guidance and support to ME/CFS patients. EMEA is committed to continue surveying patients in order to provide ongoing data to support urgent and decisive action from policymakers in Europe in order to improve the situation for p eople with ME and their families in Europe. The EMEA survey of ME/CFS patients in Europe is a valuable part of the resources required as EMEA works to support the implementation of the UN Universal Declaration of Human Rights, the UN Convention on the Rights of Persons with Disabilities, and the UN Political Declaration on Universal Health Coverage, to respect patients’ rights and ensure that European government policies do not leave ME/CFS patients behind. Executive Committee, European ME Alliance Invest in ME Research Page 13 of 32
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