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
; 22(3): 373-384, 2019 06.
Article
em En
| MEDLINE
| ID: mdl-30632248
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.Palavras-chave
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Base de dados:
MEDLINE
Assunto principal:
Atitude Frente a Saúde
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Síndrome de Fadiga Crônica
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Sujeitos da Pesquisa
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Encefalomielite
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Esclerose Múltipla
Idioma:
En
Ano de publicação:
2019
Tipo de documento:
Article