Journal of IiMER Volume 13 Issue 1 Invest in ME Research as there were few studies, which were small and had substantial methodological limitations. The qualitative studies mostly described patient experiences in primary care. Many perceived that getting a diagnosis was a milestone and that individually tailored support was crucial for them to move on with their lives. They experienced the process of obtaining a diagnosis as burdensome and frustrating and felt that they were met with ignorance and lack of understanding. Discussion This report shows that there are many scientific evidence gaps regarding ME/CFS. Many gaps, such as methods for diagnosis and efficacy of curative or disease modifying treatments, are related to the lack of understanding of the aetiology behind ME/CFS. This report also indicates that a thorough diagnostic work-up is crucial. Multidisciplinary specialist competences are necessary to reliably exclude other disorders. Finally, the absence of evidence for effect of ME/CFS treatments does not mean that the treatments lack effect, but rather indicates that Project group Experts Per Julin, MD, PhD, Karolinska Institutet, Stockholm, and the ME/CFS-clinic, Stora Sköndal Per Lytsy, MD, Assistant Professor, SBU Marie Åsberg, Professor, Karolinska Institutet and Danderyd Hospital, Stockholm (advisory role in assessing differential diagnoses) SBU Agneta Pettersson (Project Manager) Susanne Gustafsson (Information Specialist) Caroline Jungner (Project Administrator) Lina Leander (Assistant Project Manager) Hanna Olofsson (Information Specialist) Scientific reviewers Kristina Bengtsson Boström, Skaraborg Kristina Glise, Göteborg Björn Mårtensson, Stockholm Anne Söderlund, Västerås SBU Assessments no 295e, 2019 www.sbu.se/en • registrator@sbu.se English Proofreading: Rebecca Silverstein, SBU Graphic Design: Åsa Isaksson, SBU Invest in ME Research (Charity Nr. 1153730) investinme.org Page 19 of 52 research is needed to clarify the effects of current treatments for people diagnosed with ME/CFS according to the Canadian Consensus Criteria. Meanwhile, it is important to support people with ME/CFS so they can attain the best quality of life, levels of function and participation in society as is possible. Since ME/CFS is relatively uncommon compared to other similar disorders, e.g. stress related exhaustion disorder or chronic pain, specialist clinics for ME/CFS would probably be advantageous, as they would be most likely to be able to closely follow the research and quickly implement new developments into clinical practice. Small charity BIG Cause With no major investment into correct research into myalgic encephalomyelitis during the last decades Invest in ME Research has, with a determined band of supporters, taken action for change in the absence of any coherent or scientific establishment policies. Funding has to be given to biomedical research and new knowledge from other disciplines such as virology, immunology, endocrinology etc. has to be brought in to help research into ME. Invest in ME Research has initiated and funded high-quality biomedical research at UEA and Quadram Institute Biosciences and at UCL - and facilitated development of international collaboration with other research institutes. Vision with action can change the world

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