DecodeME

{{Short description|Genetic study on ME/CFS}} {{Use dmy dates|date=April 2026}} {{Use British English|date=July 2022}} {{About|the ongoing study whether ME/CFS has a genetic risk factor|the defunct genome testing service|deCODE genetics}} {{distinguish|Decode Entertainment}}

{{Infobox diagnostic | name = DecodeME | image = File:DecodeME Study Logo.svg | alt = | caption = The study's official logo | pronounce = | purpose = Research (DNA) | test of = | based on = | synonyms = | reference_range = | calculator = | DiseasesDB =  | ICD11 = 8E49<ref>https://icd-11.online/23960</ref> | ICD10 = G93.32.<ref>{{Cite web| title=New ICD-10 Code for ME/CFS - (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) | url=https://solvecfs.org/wp-content/uploads/2022/12/New-ICD10-code-MECFS-Handout-for-providers-final12-6-22-1.pdf | archive-url=https://web.archive.org/web/20230202021449/https://solvecfs.org/wp-content/uploads/2022/12/New-ICD10-code-MECFS-Handout-for-providers-final12-6-22-1.pdf | archive-date=2023-02-02}}</ref><ref>{{cite web | title=ICD-10-CM Diagnosis Code G93.32 - Myalgic encephalomyelitis/Chronic fatigue syndrome | url=https://icdlist.com/icd-10/G93.32 }}</ref> | ICD9 = | ICDO = | MedlinePlus =  | eMedicine =  | MeshID = | OPS301 =  | LOINC =  | video1 = }}

'''DecodeME''' is a genome-wide association study searching for genetic risk factors for Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date.<ref name=":0" /><ref name=":1">{{Cite news |last=O'Neill |first=Sean |date=2020-06-23 |title=Chronic fatigue syndrome: Search for genetic clues |language= |work=The Times |url=https://www.thetimes.com/uk/healthcare/article/chronic-fatigue-syndrome-search-for-genetic-clues-kfclg0qh6 |access-date=2022-07-31 |issn=0140-0460}}</ref> Recruitment closed on 15 November 2023 and preliminary results were published in a preprint on 7 August 2025.<ref name=":4">{{Cite journal |last=Collaboration |first=DecodeME |date=2025-08-06 |title=Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome |url=https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study- |language=English}}</ref>

== Background == ME/CFS is a chronic medical condition that often causes significant disability, and whose cause is unknown.<ref>{{Cite web |title=Recommendations {{!}} Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management {{!}} Guidance {{!}} NICE |url=https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#principles-of-care-for-people-with-mecfs |access-date=2022-07-31 |website=www.nice.org.uk |date=29 October 2021 }}</ref> Genetic studies of ME/CFS have been done before, but without significant findings. The authors of a 2022 study suggested that research with more participants is needed to discover statistically significant differences.<ref>{{Cite journal |last1=Hajdarevic |first1=Riad |last2=Lande |first2=Asgeir |last3=Mehlsen |first3=Jesper |last4=Rydland |first4=Anne |last5=Sosa |first5=Daisy D. |last6=Strand |first6=Elin B. |last7=Mella |first7=Olav |last8=Pociot |first8=Flemming |last9=Fluge |first9=Øystein |last10=Lie |first10=Benedicte A. |last11=Viken |first11=Marte K. |date=2022-05-01 |title=Genetic association study in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) identifies several potential risk loci |journal=Brain, Behavior, and Immunity |language=en |volume=102 |pages=362–369 |doi=10.1016/j.bbi.2022.03.010 |pmid=35318112 |s2cid=247549585 |issn=0889-1591|doi-access=free |hdl=10852/94241 |hdl-access=free }}</ref>

DecodeME aims to perform such a large study. It is being run as a partnership between Action for ME and the University of Edinburgh's MRC Human Genetics Unit, with Chris Ponting as chief investigator, and with £3.2 million in funding from the UK's Medical Research Council and the National Institute for Health Research.<ref name=":0">{{Cite web |date=2020-06-22 |title=UK to launch world's largest genetic study into chronic fatigue syndrome |url=http://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs |access-date=2022-07-31 |website=the Guardian |language=en}}</ref> The researchers have also worked with Forward ME and a group of patient advocates, the latter of which contributed to the design of the study.<ref>{{Cite web |title=How will you ensure that you have the support of the community of people with ME/CFS for this project? |url=https://www.decodeme.org.uk/faqs/how-will-you-ensure-that-you-have-the-support-of-the-community-of-people-with-me-cfs-for-this-project/ |access-date=2022-07-31 |website=DecodeME |language=en-GB |archive-date=2022-07-31 |archive-url=https://web.archive.org/web/20220731055831/https://www.decodeme.org.uk/faqs/how-will-you-ensure-that-you-have-the-support-of-the-community-of-people-with-me-cfs-for-this-project/ |url-status=dead }}</ref><ref name=":2">{{Cite web |last=Carmichael |first=Hannah |date=2022-09-11 |title=People with ME invited to take part in major genetic study |url=https://www.standard.co.uk/tech/science/people-dna-dna-research-b1024901.html |access-date=2022-09-12 |website=Evening Standard |language=en}}</ref>

The investigators hope the study's findings will inform further research into the pathology of ME/CFS and potential treatments. They also hope that discovering a genetic connection will help dispel some of the stigma around ME/CFS.<ref>{{Cite web |date=2023-09-21 |title=Major study hopes to tackle ME stigma |url=https://www.independent.co.uk/news/health/symptoms-university-of-edinburgh-dna-leeds-b2416303.html |access-date=2023-09-22 |website=The Independent |language=en}}</ref>

== History == The study announced receipt of funding in June 2020, and recruitment was opened on 12 September 2022.<ref name=":0" /><ref name=":2" /><ref name=":3">{{Cite web |date=2022-09-11 |title=People with ME invited to take part in major genetic study |url=https://www.independent.co.uk/news/health/people-dna-covid-b2165026.html |access-date=2022-09-12 |website=The Independent |language=en}}</ref> In January 2023, the team wrote that over 17,000 patients had completed the survey, of which almost 9,000 were sent collection kits.<ref>{{Cite web |last=Lewis |first=Issy |date=2023-01-31 |title=What We Achieved in 2022 |url=https://www.decodeme.org.uk/what-we-achieved-in-2022/ |access-date=2023-02-01 |website=DecodeME |language=en-GB}}</ref> On 2 May 2023 they announced that over 10,000 people had been asked to provide samples.<ref>{{Cite web |title=We've reached 10,000 DNA participants! |url=https://twitter.com/DecodeMEstudy/status/1653338646999605249 |access-date=2023-05-29 |website=Twitter |publisher=DecodeME |language=en}}</ref>

In June 2023, DecodeME made changes to their data analysis methodology that allowed them to invite additional participants to give DNA.<ref>{{Cite web |last=Lewis |first=Issy |date=2023-06-16 |title=Inviting More Participants to Donate DNA |url=https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/ |access-date=2023-09-22 |website=DecodeME |language=en-GB}}</ref> Recruitment for the study closed on 15 November 2023.<ref>{{Cite web |last=Connolly |first=Anne |date=2023-11-15 |title=Closing participant recruitment - Thank you! |url=https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna-copy/ |access-date=2023-11-16 |website=DecodeME |language=en-GB}}</ref> A preprint of the preliminary results was released on 7 August 2025.<ref name=":4" />

== Methodology == DecodeME is a genome-wide association study with a case-control design. Expected recruitment is at least 20,000 patients whose onset was not associated with COVID-19, and 5,000 people with long COVID who were diagnosed with ME/CFS after COVID-19. DNA will be collected by sending patients kits to collect saliva at home and control samples will be obtained from the UK Biobank.<ref name=":1" /><ref>{{Cite journal |author=Andy Devereux-Cooke |author2=Sian Leary |author3=Simon J. McGrath |author4=Emma Northwood |author5=Anna Redshaw |author6=Charles Shepherd |author7=Pippa Stacey |author8=Claire Tripp |author9=Jim Wilson |author10=Margaret Mar |author11=Danielle Boobyer |author12=Sam Bromiley |author13=Sonya Chowdhury |author14=Claire Dransfield |author15=Mohammed Almas |author16=Øyvind Almelid |author17=David Buchanan |author18=Diana Garcia |author19=John Ireland |author20=Shona M. Kerr |author21=Isabel Lewis |author22=Ewan McDowall |author23=Malgorzata Migdal |author24=Phil Murray |author25=David Perry |author26=Chris P. Ponting |author27=Veronique Vitart |author28=Jareth C. Wolfe |date=19 Jul 2022 |title=DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome |journal=BMC Neurology |volume=22 |issue=1 |page=269 |doi=10.1186/s12883-022-02763-6|pmid=35854226 |pmc=9294749 |doi-access=free }}</ref> There will also be a survey to collect data on symptoms.<ref name=":3" /> If new risk factors are identified, it may enable further research into potential causes, tests, or treatments.<ref name=":0" /><ref>{{Cite web |date=2020-06-23 |title=The world's largest study of chronic fatigue syndrome to launch in UK |url=https://happiful.com/decodeme-chronic-fatigue-syndrome/ |access-date=2022-07-31 |website=Happiful Magazine |language=en}}</ref>

== References == <references />

== External links == * [https://www.decodeme.org.uk/ Official Site]

{{DEFAULTSORT:DecodeME}} Category:Clinical research Category:British medical research Category:Genetics studies Category:Medical genetics in the United Kingdom Category:Myalgic encephalomyelitis/chronic fatigue syndrome Category:Population genetics in the United Kingdom Category:Population genetics organizations