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

Background The Clinical Understanding and Research Excellence in ME / CFS group (Cure ME ) 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. Aim To explore the views of participants with ME / CFS and MS on Cure ME research findings, dissemination and future biomedical research priorities. Method Five ME / CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically. Results 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. Conclusion 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.