Using a participatory approach to develop and implement the UK ME/CFS Biobank.

Since the millennium, we have witnessed an increasing number of biobanks acting as key infrastructure for biomedical research [1]. Biobanks are a cost-effective and nimble means of providing high-quality samples linked to comprehensive clinical and socio-demographic participant data. This editorial highlights the importance of biobanks for the advancement of scientific knowledge and of patient participation and engagement as drivers of success by outlining the procedures and rationale behind the development of the UK ME/CFS Biobank, which used a participatory approach. For over 30 years, participatory community research has brought together successfully academics and potential research participants in the planning stages of projects, allowing both parties to share the power of decision-making [2] in the research process, despite a perceived threat to the academic research establishment [3]. Having its roots grounded on two distinct schools of thought, Kurt Levin’s cycle of ‘fact finding, action and reflection’ was initiated in the 40’s while empowering dialogical research methods originated in developing countries during the 70’s [4,5,6]. The participatory research approach incorporated further contributions from feminist and post-colonialist authors, and has evolved into a framework, with the interconnected elements of participation, research, and action at its core [5]. The lack of validation and legitimisation of ME/CFS has resulted in part from an inadequate understanding of its aetiology and pathophysiology as well as the absence of sensitive and specific tests to confirm diagnosis. This in turn has hampered investigation into, and development of, effective treatments. Despite the growing number of published biomedical research studies on ME/CFS [7], advances in understanding disease mechanisms and the translation of research findings into clinical practice have been limited. The lack of coordination in ME/CFS research, of consensus on case definitions, and of attention to methodological rigour have worked together to threaten the interpretation of evidence and the comparability and generalisability of study outcomes [8,9,10]. Such poor understanding of the causality and disease mechanisms of ME/CFS has led to disagreements about its nature and management among professionals, patients, and the general population. These differences have further impeded research progress and affected the healthcare provided to people with ME/CFS (PWME), who often need to overcome significant barriers related to the recognition of their illness and its effect on their lives, as well as to access to care and effective treatment [11]. Particularly problematic have been conflicts between patients, doctors and researchers related to distinct perceptions of the nature of the condition and its management [12,13]. In the clinical context, PWME often have defined ideas about what their issues are and how they might be analysed and managed, which sometimes conflict with those held by medical professionals. Disagreements are no less relevant in ME/CFS research, in which research priorities and conducts have been challenged, and patients have been expressing great dissatisfaction with study conclusions, the lack of transparency, and the methodological rigour of some