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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

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
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 (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.

chronic fatigue syndrome, focus groups, multiple sclerosis, myalgic encephalomyelitis, patient and public involvement, qualitative research
1369-6513
373-384
Lacerda, Eliana M.
8d34b2e3-5ec2-4fa2-82cb-9fa72f551b46
McDermott, Clare
059da963-e1ec-48d7-8c63-137f92b78a12
Kingdon, Caroline C.
7973821b-3d6f-484c-abd4-f32f089f944b
Butterworth, Jack
b7f733c8-c703-47d7-b553-472afc01a94c
Cliff, Jacqueline M.
adc7cd78-9411-4dd0-8a6c-58061e20280c
Nacul, Luis
4369127e-d5a6-47c7-a1ac-b3a1b1e410ef
Lacerda, Eliana M.
8d34b2e3-5ec2-4fa2-82cb-9fa72f551b46
McDermott, Clare
059da963-e1ec-48d7-8c63-137f92b78a12
Kingdon, Caroline C.
7973821b-3d6f-484c-abd4-f32f089f944b
Butterworth, Jack
b7f733c8-c703-47d7-b553-472afc01a94c
Cliff, Jacqueline M.
adc7cd78-9411-4dd0-8a6c-58061e20280c
Nacul, Luis
4369127e-d5a6-47c7-a1ac-b3a1b1e410ef

Lacerda, Eliana M., McDermott, Clare, Kingdon, Caroline C., Butterworth, Jack, Cliff, Jacqueline M. and Nacul, Luis (2019) 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 Expectations, 22 (3), 373-384. (doi:10.1111/hex.12857).

Record type: Article

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.

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Accepted/In Press date: 25 November 2018
e-pub ahead of print date: 10 January 2019
Published date: 1 June 2019
Keywords: chronic fatigue syndrome, focus groups, multiple sclerosis, myalgic encephalomyelitis, patient and public involvement, qualitative research

Identifiers

Local EPrints ID: 431710
URI: http://eprints.soton.ac.uk/id/eprint/431710
ISSN: 1369-6513
PURE UUID: 9d75715e-fb09-49ab-83db-bef151fc51c3

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Date deposited: 14 Jun 2019 16:30
Last modified: 07 Oct 2020 00:45

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