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Health Expect. 2019 Jan 10. doi: 10.1111/hex.12857. [Epub ahead of print]

Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study.

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Clinical Research Department, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK.
Primary Medical Care, Faculty of Medicine, University of Southampton, Southampton, UK.
Department of Immunology and Infection, Faculty of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK.



The Clinical Understanding and Research Excellence in ME/CFS group (CureME) at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank (UKMEB), which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis (MS) and healthy controls. Patient and public involvement have played a central role from its inception.


To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities.


Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically.


A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: (a) Seeking coherence: participants' reactions to initial research findings; (b) Seeking acceptance: participants explore issues of stigma and validation; (c) Seeking a diagnosis: participants explore issues around diagnosis in their lives; (d) Seeking a better future: participants' ideas on future research; and (e) Seeking to share understanding: participants' views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of "putting together a jigsaw" of evidence through perseverance and collaboration.


This study provides insight into the emotional, social and practical importance of research to people with MS and ME/CFS, suggesting a range of research topics for the future. Findings should inform biomedical research directions in ME/CFS and MS, adding patients' voices to a call for a more collaborative research culture.


chronic fatigue syndrome; focus groups; multiple sclerosis; myalgic encephalomyelitis; patient and public involvement; qualitative research


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