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, by
Eliana M. Lacerda, Clare McDermott, Caroline C. Kingdon, Jack Butterworth, Jacqueline M Cliff, Luis Nacul in Health Expectations [Preprint January 10, 2019]
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.
Excerpt from research paper:
4.1 Summary of key results
In recent years, patient perspectives have become increasingly important in informing the is planning, conduct and dissemination of research. In this study, participants with ME/CFS and MS illustrated the importance of research as means of seeking coherence to make sense of their illness (Theme 1), seeking diagnostic clarity (Theme 2) and proof of illness by which they could gain acceptance and from the medical profession and from society (Theme 3). Participants offered ideas on future research priorities (Theme 4) and recommendations for dissemination (Theme 5).
A key aim in this study was to elicit patient views on biomedical research priorities for the future. Overall, the research topics proposed fitted already familiar categories, such as immunological and mitochondrial dysfunction in ME, triggers including viruses, toxins and other pathogens, and biomedical differences between different subgroups. For participants with MS, the search for a cure was viewed as paramount, though participants were also interested in investigating genetic, viral, and immunological factors in triggering the illness. While not unexpected, these findings have value in confirming findings from our previous patient consultation work.2 What this study adds to our understanding is a vivid contextualization of these specific requests, within a wider and more personal understanding of how biomedical confirmation of an illness, or lack of it, can impact the patient’s quality of life, with factors including social acceptance, patient–doctor relationships, self‐confidence and support.
An intriguing finding of the study was the extent to which some of the MS participants reported feeling disbelieved by doctors, employers, or others about their symptoms prior to diagnosis. Their accounts of distress and loss of social confidence resulting from this resonate with the experiences of ME/CFS patients. Within this context, sharing research results was portrayed not only as providing information to medical professionals, families, and others in society, but also as a means of changing attitudes. Participants called for a more collaborative research culture, with greater emphasis on explaining where new knowledge fitted into a wider “jigsaw” of knowledge, and less on apparent “breakthrough” discoveries. Participants expressed pleasure at having played a part in contributing to the current research, tempered with awareness that determination was needed for the research journey ahead.