DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Andy Devereux-Cooke; Sian Leary; Simon  McGrath; Emma Northwood; Anna Redshaw; Charles Shepherd; Pippa Stacey; Claire Tripp; Jim Wilson; Margaret  Mar Countess of Mar; Danielle  Boobyer; Sam Bromiley; Sonya  Chowdhury; Claire  Dransfield; Mohammad Almas; Øyvind Almelid; David Buchanan; Diana Garcia; John Ireland; Shona Kerr; Isabel Lewis; Malgorzata Migdal; Ewan McDowall; Phil Murray; Dave Perry; Chris P Ponting; Veronique Vitart; Jareth Wolfe

doi:10.1186/s12883-022-02763-6

DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Andy Devereux-Cooke^*, Sian Leary, Simon McGrath, Emma Northwood, Anna Redshaw, Charles Shepherd, Pippa Stacey, Claire Tripp, Jim Wilson, Margaret Mar Countess of Mar, Danielle Boobyer, Sam Bromiley, Sonya Chowdhury^*, Claire Dransfield, Mohammad Almas, Øyvind Almelid, David Buchanan, Diana Garcia, John Ireland, Shona KerrIsabel Lewis, Malgorzata Migdal, Ewan McDowall, Phil Murray, Dave Perry, Chris P Ponting^*, Veronique Vitart, Jareth Wolfe

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

Abstract / Description of output

Background Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy.
Methods Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants’ saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants’ genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology.
Discussion The DecodeME study has been reviewed and given a favourable opinion by the North West – Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online (www.decodeme.org.uk). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications.

Original language	English
Journal	Bmc neurology
Early online date	19 Jul 2022
DOIs	https://doi.org/10.1186/s12883-022-02763-6
Publication status	E-pub ahead of print - 19 Jul 2022

Keywords / Materials (for Non-textual outputs)

Myalgic encephalomyelitis
co-production
genome-wide association study
Patient and Public involvement

Access to Document

10.1186/s12883-022-02763-6

DecodeME_ Community recruitment for a large genetics study of myalgic encephalomyelitis _ chronic fatigue syndrome_published pdfFinal published version, 1.53 MB

Computational and Disease Genomics
Ponting, C.
1/04/18 → 31/03/23
Project: Research

DecodeME Questionnaire
Ponting, C. (Creator), Baker, T. (Creator) & Garcia, D. (Creator), Edinburgh DataShare, 7 Apr 2023
DOI: 10.7488/ds/3836, https://doi.org/10.1186/s12883-022-02763-6
Dataset

Cite this

Devereux-Cooke, A., Leary, S., McGrath, S., Northwood, E., Redshaw, A., Shepherd, C., Stacey, P., Tripp, C., Wilson, J., Mar Countess of Mar, M., Boobyer, D., Bromiley, S., Chowdhury, S., Dransfield, C., Almas, M., Almelid, Ø., Buchanan, D., Garcia, D., Ireland, J., ... Wolfe, J. (2022). DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome. Bmc neurology. Advance online publication. https://doi.org/10.1186/s12883-022-02763-6

@article{75b4a41099a54934b4ad34d7034b75ce,

title = "DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome",

abstract = "Background Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy.Methods Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants{\textquoteright} saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants{\textquoteright} genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology.Discussion The DecodeME study has been reviewed and given a favourable opinion by the North West – Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online (www.decodeme.org.uk). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications. ",

keywords = "Myalgic encephalomyelitis, co-production, genome-wide association study, Patient and Public involvement",

author = "Andy Devereux-Cooke and Sian Leary and Simon McGrath and Emma Northwood and Anna Redshaw and Charles Shepherd and Pippa Stacey and Claire Tripp and Jim Wilson and {Mar Countess of Mar}, Margaret and Danielle Boobyer and Sam Bromiley and Sonya Chowdhury and Claire Dransfield and Mohammad Almas and {\O}yvind Almelid and David Buchanan and Diana Garcia and John Ireland and Shona Kerr and Isabel Lewis and Malgorzata Migdal and Ewan McDowall and Phil Murray and Dave Perry and Ponting, {Chris P} and Veronique Vitart and Jareth Wolfe",

note = "Funding Information: DecodeME is funded by the Medical Research Council (MRC) and National Institute for Health Research (NIHR), grant number MC_PC_20005. The study{\textquoteright}s Protocol has undergone full external peer review by the MRC as part of the peer review process. The study is also supported by the Medical Research Council University Unit award to the MRC Human Genetics Unit, University of Edinburgh, grant number MC_UU_00007/10 (DB, SK, VV) and MC_UU_00007/15 ({\O}A, IL, PM). MRC and NIHR facilitated discussions between scientists and people with ME prior to submission of the funding application, but played no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. Funding Information: We thank the community of people with ME/CFS, their carers and charities, and Forward-ME for their dedication and steadfast support of the DecodeME project. We also grateful to Professor Sir Stephen T Holgate for his tireless and selfless efforts on behalf of people with ME/CFS, and to the DecodeME Scientific Advisory Board for their critical contributions. This research is being conducted using the UK Biobank Resource under Application Number 76173. We are grateful to the Solve ME/CFS Initiative (Solve M.E.) for assistance with digital infrastructure. The CureME team at the London School of Hygiene and Tropical Medicine contributed to the funded grant application. Funding Information: ADC is a committee member of the Science for ME online support discussion forum. CD is employed by Action for ME. CPP is Deputy Chair of the ME/CFS Research Collaborative and has PhD studentships funded by Action for ME & the Chief Scientist Office (Scotland), and by ME Research UK. CS is Medical Adviser to the ME Association (unpaid). DBo is a Director (unpaid) of Beyond Bare Minimum CIC that helps disabled people get and maintain remote jobs. JW is on the ME/CFS Research Collaborative Patient Advisory Group and receives travel expenses for participation in Board Meetings. MA holds shares in Pfizer, BioTech, Merck and AstraZeneca. PM served as Trustee of Action for ME (November 2018 – January 2022). SC is CEO of Action for ME; Chair, World ME Alliance; and, Non-Executive Director, Curo Group. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

year = "2022",

month = jul,

day = "19",

doi = "10.1186/s12883-022-02763-6",

language = "English",

journal = "Bmc neurology",

issn = "1471-2377",

publisher = "BioMed Central",

}

Devereux-Cooke, A, Leary, S, McGrath, S, Northwood, E, Redshaw, A, Shepherd, C, Stacey, P, Tripp, C, Wilson, J, Mar Countess of Mar, M, Boobyer, D, Bromiley, S, Chowdhury, S, Dransfield, C, Almas, M, Almelid, Ø, Buchanan, D, Garcia, D, Ireland, J, Kerr, S, Lewis, I, Migdal, M, McDowall, E, Murray, P, Perry, D, Ponting, CP , Vitart, V & Wolfe, J 2022, 'DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome', Bmc neurology. https://doi.org/10.1186/s12883-022-02763-6

TY - JOUR

T1 - DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

AU - Devereux-Cooke, Andy

AU - Leary, Sian

AU - McGrath, Simon

AU - Northwood, Emma

AU - Redshaw, Anna

AU - Shepherd, Charles

AU - Stacey, Pippa

AU - Tripp, Claire

AU - Wilson, Jim

AU - Mar Countess of Mar, Margaret

AU - Boobyer, Danielle

AU - Bromiley, Sam

AU - Chowdhury, Sonya

AU - Dransfield, Claire

AU - Almas, Mohammad

AU - Almelid, Øyvind

AU - Buchanan, David

AU - Garcia, Diana

AU - Ireland, John

AU - Kerr, Shona

AU - Lewis, Isabel

AU - Migdal, Malgorzata

AU - McDowall, Ewan

AU - Murray, Phil

AU - Perry, Dave

AU - Ponting, Chris P

AU - Vitart, Veronique

AU - Wolfe, Jareth

N1 - Funding Information: DecodeME is funded by the Medical Research Council (MRC) and National Institute for Health Research (NIHR), grant number MC_PC_20005. The study’s Protocol has undergone full external peer review by the MRC as part of the peer review process. The study is also supported by the Medical Research Council University Unit award to the MRC Human Genetics Unit, University of Edinburgh, grant number MC_UU_00007/10 (DB, SK, VV) and MC_UU_00007/15 (ØA, IL, PM). MRC and NIHR facilitated discussions between scientists and people with ME prior to submission of the funding application, but played no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. Funding Information: We thank the community of people with ME/CFS, their carers and charities, and Forward-ME for their dedication and steadfast support of the DecodeME project. We also grateful to Professor Sir Stephen T Holgate for his tireless and selfless efforts on behalf of people with ME/CFS, and to the DecodeME Scientific Advisory Board for their critical contributions. This research is being conducted using the UK Biobank Resource under Application Number 76173. We are grateful to the Solve ME/CFS Initiative (Solve M.E.) for assistance with digital infrastructure. The CureME team at the London School of Hygiene and Tropical Medicine contributed to the funded grant application. Funding Information: ADC is a committee member of the Science for ME online support discussion forum. CD is employed by Action for ME. CPP is Deputy Chair of the ME/CFS Research Collaborative and has PhD studentships funded by Action for ME & the Chief Scientist Office (Scotland), and by ME Research UK. CS is Medical Adviser to the ME Association (unpaid). DBo is a Director (unpaid) of Beyond Bare Minimum CIC that helps disabled people get and maintain remote jobs. JW is on the ME/CFS Research Collaborative Patient Advisory Group and receives travel expenses for participation in Board Meetings. MA holds shares in Pfizer, BioTech, Merck and AstraZeneca. PM served as Trustee of Action for ME (November 2018 – January 2022). SC is CEO of Action for ME; Chair, World ME Alliance; and, Non-Executive Director, Curo Group. Publisher Copyright: © 2022, The Author(s).

PY - 2022/7/19

Y1 - 2022/7/19

N2 - Background Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy.Methods Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants’ saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants’ genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology.Discussion The DecodeME study has been reviewed and given a favourable opinion by the North West – Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online (www.decodeme.org.uk). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications.

AB - Background Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy.Methods Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants’ saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants’ genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology.Discussion The DecodeME study has been reviewed and given a favourable opinion by the North West – Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online (www.decodeme.org.uk). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications.

KW - Myalgic encephalomyelitis

KW - co-production

KW - genome-wide association study

KW - Patient and Public involvement

U2 - 10.1186/s12883-022-02763-6

DO - 10.1186/s12883-022-02763-6

M3 - Article

SN - 1471-2377

JO - Bmc neurology

JF - Bmc neurology

ER -

DecodeME: Community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome

Abstract / Description of output

Keywords / Materials (for Non-textual outputs)

Access to Document

Fingerprint

Projects

Computational and Disease Genomics

Datasets

DecodeME Questionnaire

Cite this