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

• Published in: Health expectations : an international journal of public participation in health care and health policy Vol. 22; no. 3; pp. 373 - 384
• Main Authors: Lacerda, Eliana M., McDermott, Clare, Kingdon, Caroline C., Butterworth, Jack, Cliff, Jacqueline M., Nacul, Luis
• Format: Journal Article
• Language: English
• Published: England John Wiley & Sons, Inc 01.06.2019; John Wiley and Sons Inc; Wiley
• Subjects: Adaptation, Psychological; Adult; Attitude to Health; Chronic fatigue syndrome; Clinical medicine; Collaboration; Data storage; Diagnosis; Encephalomyelitis; Encephalomyelitis - psychology; England; Epidemiology; Fatigue; Fatigue Syndrome, Chronic - psychology; Female; Focus Groups; Genetics; Health aspects; Hope; Humans; Hygiene; Immunology; Male; Medical research; Medicine; Medicine, Experimental; Middle Aged; Multiple sclerosis; Multiple Sclerosis - psychology; myalgic encephalomyelitis; Original Research Paper; Original Research Papers; patient and public involvement; Public involvement; Qualitative Research; Research Design; Research Subjects - psychology; Social Stigma; England; United Kingdom > UK; chronic fatigue syndrome; myalgic encephalomyelitis; qualitative research; patient and public involvement; multiple sclerosis; focus groups
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.12857

Background 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. Aim To explore the views of participants with ME/CFS and MS on CureME 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.