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

Health Expect. 2019 Jun;22(3):373-384. doi: 10.1111/hex.12857. Epub 2019 Jan 10.

Abstract

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.

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

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Attitude to Health*
  • Encephalomyelitis / psychology*
  • England
  • Fatigue Syndrome, Chronic / psychology*
  • Female
  • Focus Groups
  • Hope
  • Humans
  • Male
  • Middle Aged
  • Multiple Sclerosis / psychology*
  • Qualitative Research
  • Research Design
  • Research Subjects / psychology*
  • Social Stigma