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[[File:DecodeME_logo.png|border|frameless|250px|right|class=white|alt=Decode ME logo]] '''DecodeME''' is a very large UK-based study to investigate DNA profiles of people with [[myalgic encephalomyelitis]]/[[chronic fatigue syndrome]], in comparison to healthy controls.<ref name="website">{{Cite web | url = https://www.decodeme.org.uk/ | title = Get Involved | last = DecodeME|website=DecodeME|language=en-GB|access-date=2020-06-23}}</ref> DecodeME is also known as the '''ME/CFS Biomedical Partnership''', and is a collaboration between researchers, people with ME/CFS, their carers and the general public.<ref name="website" /> DecodeME is the largest ever study investigating biological differences in people with ME/CFS, and will look at any genetic factors that may be linked to the [[Causes|causing ME]] and how the illness works.<ref name="Announce25MEGroup">{{Cite web | url = https://25megroup.org/wp-content/uploads/2020/06/£3.2m-funding-for-DecodeME-largest-ever-DNA-study-of-ME.pdf | title=Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study | last = 25% ME Group|first = | authorlink = | date = Jun 23, 2020 | website = [[25 Percent ME Group|25% ME Group]]| archive-url = | archive-date = |url-status = | access-date=2020-06-23}}</ref> ==Funding== It is funded by the £3.2 million from the UK's Medical Research Council and the National Institute for Health Research<ref name="website" /><ref name="Announce25MEGroup" /> == Patient criteria == DecodeME planned to recruit 20,000 ME/CFS patients, initially from the UK, for a genome-wide association study (GWAS). Recruitment was planned to begin in 2021, but then delayed until 2022. Patients were encouraged to give their contact details in advance, including before the study received funding or ethics approval.<ref name="faq" /> Multiple selection criteria will be used to decide which patients to enrol in the study; patients must meet either the [[Canadian Consensus Criteria]] for ME/CFS, or the broader [[Systemic Exertion Intolerance Disease|Systemic exertion intolerance disease]] criteria.<ref name="faq">{{Cite web | url = https://www.decodeme.org.uk/faqs/ | title = Frequently Asked Questions | last = DecodeME|website=DecodeME|language=en-GB|access-date=2020-06-23}}</ref> Other criteria include that patients will need to be adults aged at least 16, and will need to have [[post-exertional malaise]]. Patients who ''only'' meet the former UK [[NICE guidelines|NICE diagnostic criteria]] (2007-2021), the [[Oxford criteria]] (which has been recommended for retirement), or the [[Fukuda criteria]], and people who have [[idiopathic chronic fatigue]] will not be included.<ref name="website" /><ref name="faq" /> People who have previously recovered will also not be included.<ref name="faq" /> ==Partners== The UK charities involved as partners are [[Action for ME]] and [[Forward-ME]]. The other partners are the Medical Research Council Human Genetics Unit, and the UK's National Institute for Health Research.<ref name="website" /> ==Timeline== *Jan 2022, phase 1 due to begin on Jan 31st with 50 [[severe and very severe ME]] patients plus 500 randomly selected from online participants<ref name="BlogJan2022">{{Cite web | url = https://www.decodeme.org.uk/great-news-decodeme-opens-for-first-participants-this-month/ | title = Great news! DecodeME opens for first participants this month | date = Jan 2022 | website = DecodeME|language=en-GB|access-date=2022-03-26}}</ref> * Jun 14, 2021, Ethics approval granted. REC reference 21/NW/0169.<ref name="EthicsREC">{{Cite web | date = Jun 14, 2021 | title = DecodeME | url = https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/decodeme/|website=[[Health Research Authority]]|access-date=2022-03-26}}</ref> *2021, Beyond the scenes update states that data will be analyzed by Thermo Fisher, first set due back by end of 2022. Data will takes months to analyze, possibly some by "halfway through 2023". Funding has been increased to add an extra 5000 people to the study who got ME/CFS following [[COVID-19|Covid]].<ref name="bindthescenes">{{Cite web | url = https://www.decodeme.org.uk/webinar-recording-transcript-why-patient-involvement-is-crucial/ | title = Why patient involvement is crucial | date = 2021 | last = |website=DecodeME|language=en-GB|access-date=2022-03-26}}</ref> *Nov 2020, DecodeME announces that [[London School of Hygiene and Tropical Medicine]] will no longer be involved. Co-Principle Investigator Dr [[Luis Nacul]] of LSHTM will no longer be an investigator, and Dr [[Eliana Lacerda]] wil no longer be on the Trial Management Group.<ref name="LSHTM">{{Cite web | url = https://www.decodeme.org.uk/partnership-update/ | title = Partnership update | date = 2020-11-30 | last = DecodeME|website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref><ref name="about-2020">{{Cite web | url = https://www.decodeme.org.uk/about-us/ | title = About the ME/CFS Biomedical Partnership | last = DecodeME|first = | authorlink = |website=DecodeME|archive-url=http://web.archive.org/web/20200716192716/https://www.decodeme.org.uk/about-us/|archive-date=2020-07-16|url-status=dead|access-date=2021-11-13}}</ref> *Nov 2021, Announcement that recruitment has been delayed until 2022, and will start with a small invited group first<ref name="jan2022launch">{{Cite web | url = https://www.decodeme.org.uk/update-decodeme-to-launch-in-january-2022/ | title = Update: DecodeME to launch in January 2022 | date =2021-11-11 | last = DecodeME|website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref> *Aug 26, 2020, Official start expected in "very early 2021".<ref name="early2021">{{Cite web | title = About the ME/CFS Biomedical Partnership | last = DecodeME|first = | authorlink = | date = 2020-07-16 | website = DecodeME | url=https://www.decodeme.org.uk/faqs/ |archive-url=https://web.archive.org/web/20200716170315/https://www.decodeme.org.uk/faqs/|url-status=dead|archive-date=2020-07-16|quote=This is a fantastic start but we have a huge amount to do before we open recruitment. We’re aiming for 40,000 sign-ups by the time recruitment begins in March 2021 to give us the best chance of having at least 20,000 people taking part in the study.<br>Over the last few months, we have been working hard in preparation for the project officially starting next month.}}</ref> *Jul 2020, DecodeME website launched, patients able to sign-up for news and give contact details, study recruitment planned to start on Mar 2021<ref name="Webinar2020">{{Cite web | url = https://www.decodeme.org.uk/join-our-webinar/ | title = Join our webinar Q&A | date = 2020-07-02 | last = |website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref> ==Results== ==Criticism== ==Investigators== *[[Chris Ponting]] - Principle investigator *[[Sonya Chowdhury]] - Co-investigator (PPI), CEO of Action for ME == Patient and Public Involvement Steering Group == * [[Sonya Chowdhury]], [[Action for ME]] CEO, co-investigator (PPI) on the DecodeME Trial Management Group, founding charity member of the [[UK CFS/ME Research Collaborative]] (CMRC) * [[Andrew Devereux-Cooke|Andy Devereux-Cooke]], co-founder of the [[Science for ME]] * [[Margaret of Mar, 31st Countess of Mar]], representing [[Forward-ME]] * [[Jim Wilson]], parent and carer, Associate Member of the [[CMRC]], and former Convenor of the CMRC Patient Advisory Group * [[Emma Northwood]], [[ME Association]] * [[Sian Leary]], advocate with Sheffield ME & Fibromyalgia Group, the [[ME/CFS Priority Setting Partnership]] (PSP) and [[MEActionUK]] * [[Claire Tripp]], parent and carer involved with [[MEActionUK]]<ref name="about">{{Cite web | url = https://www.decodeme.org.uk/about-us/ | title = About the ME/CFS Biomedical Partnership|website=DecodeME|language=en-GB|access-date=2021-11-13}}</ref> ==Trial management group== * Professor [[Chris Ponting]], Principal investigator * [[Sonya Chowdhury]], [[Action for ME]] CEO, co-investigator (PPI)<ref name="about" /> * [[Andrew Devereux-Cooke|Andy Devereux-Cooke]], from the PPI<ref name="about" /> == Science Advisory Board == * Professor [[Stephen Holgate]] * Professor [[Martin Tobin]] * Professor [[Julia Newton]] * Professor [[Brian Hughes]] * Professor [[Benedicte Alexandra Lie]]<ref name="about" /> ==Publications== * 2023, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study.<ref name="Bretherick2023">{{Cite journal|title=Typing myalgic encephalomyelitis by infection at onset: A DecodeME study|date=2023-08-21|url=https://openresearch.nihr.ac.uk/articles/3-20/v4|journal=NIHR Open Research|volume=3|pages=20|last=Bretherick|first=Andrew D.|author-link=Andrew Bretherick|last2=McGrath|first2=Simon J.|author-link2=Simon McGrath|last3=Devereux-Cooke|first3=Andy|author-link3=Andy Devereux-Cooke|last4=Leary|first4=Sian|author-link4=Sian Leary|last5=Northwood|first5=Emma|last6=Redshaw|first6=Anna|last7=Stacey|first7=Pippa|last8=Tripp|first8=Claire|last9=Wilson|first9=Jim|last10=Chowdhury|first10=Sonya|author-link10=Sonya Chowdhury|last11=Lewis|first11=Isabel|language=en|doi=10.3310/nihropenres.13421.4|issn=2633-4402}}</ref> - [https://openresearch.nihr.ac.uk/articles/3-20/v4 (Full text)] ==News and articles== * Jun 2020, [https://www.theguardian.com/society/2020/jun/23/uk-to-launch-genetic-study-chronic-fatigue-syndrome-cfs UK to launch genetic study of Chronic Fatigue Syndrome] - The Guardian * Jun 2020, [https://www.thetimes.co.uk/article/chronic-fatigue-syndrome-search-for-genetic-clues-kfclg0qh6? Chronic Fatigue Syndrome - search for genetic clues] - The Times * Jun 2020, [https://25megroup.org/wp-content/uploads/2020/06/%C2%A33.2m-funding-for-DecodeME-largest-ever-DNA-study-of-ME.pdf Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study] - [[25 Percent ME Group|25% ME Group]] * Jun 2020, [https://www.meaction.net/2020/06/23/3-2million-granted-for-largest-me-cfs-dna-study-ever/ £3.2 million for largest ME/CFS DNA study ever] - #MEAction * Jun 2020, [https://www.meresearch.org.uk/decodeme-the-largest-ever-me-cfs-dna-study/ DecodeME – the largest ever ME/CFS DNA study] - ME Research UK == Webinars == * 18 Dec 2020, [https://www.youtube.com/watch?v=z7lXOYQnyH4 DecodeME Winter Webinar]<ref>{{Citation | title = DecodeME Winter Webinar |url =https://www.youtube.com/watch?v=z7lXOYQnyH4|language=en|access-date=2021-05-12}}</ref> * 14 Apr 2021, [https://www.youtube.com/watch?v=ASDXDhgYHyY DecodeME April Webinar]<ref>{{Citation | title = DecodeME April Webinar |url =https://www.youtube.com/watch?v=ASDXDhgYHyY|language=en|access-date=2021-05-12}}</ref> ==Online presence== *[https://www.decodeme.org.uk/ Website] *[https://www.facebook.com/decodeMEstudy Facebook] *[https://twitter.com/decodeMEstudy Twitter] ==See also== *[[Chris Ponting]] *[[Andrew Devereux-Cooke]] *[[Action for ME]] *[[ME/CFS Gene Study]] ==Learn more== *[https://www.decodeme.org.uk/faqs/ FAQs - DecodeME] *[https://www.ukbiobank.ac.uk/2020/02/using-uk-biobank-data-to-investigate-the-biomolecular-and-genetic-bases-to-myalgic-encephalomyelitis-me-cfs/ UK Biobank genetic and biomolecular ME/CFS study] ==References== {{reflist}} [[Category:Research initiatives]] [[Category:British research initiatives]]
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