DecodeME

2021-07-15T13:30:08Z

Caroline Kingdon:Remove inaccuracies.

<div style="background-color: white; margin:3em">[[File:DecodeME_logo.png|border|frameless|250px|right|class=darkskin|alt=Decode ME logo]]</div>

'''DecodeME''' is a very large UK based study to investigate DNA profiles of people with [[myalgic encephalomyelitis]] and [[chronic fatigue syndrome]], in comparison to healthy controls.<ref name="website">{{Cite web|url=https://www.decodeme.org.uk/|title=Get Involved|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/%C2%A33.2m-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=|first=|authorlink=|last2=|first2=|authorlink2=|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" />

== Recruitment ==
DecodeME plans to recruit 20,000 ME/CFS patients, initially from the UK, for a genome-wide association study (GWAS). Recruitment will begin in 2021, but patients are encouraged to give their contact in advance.<ref name=":0" />

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=":0">{{Cite web|url=https://www.decodeme.org.uk/faqs/|title=Frequently Asked Questions|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 current UK [[NICE guidelines|NICE diagnostic criteria]], 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=":0" /> People who have previously recovered will also not be included.<ref name=":0" />

==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" />

==Results==

==Criticism==

==Investigators==
*[[Chris Ponting]]

== Patient and Public Involvement (PPI) Steering Group ==
* [[Sonya Chowdhury]]
* [[Andy Devereux-Cooke]]
* [[Margaret of Mar, 31st Countess of Mar]]
* [[Jim Wilson]]
* [[Emma Northwood]]
* [[Sian Leary]]
* [[Claire Tripp]]

== Management Group ==
* Professor [[Chris Ponting]]
* [[Sonya Chowdhury]]
* [[Andy Devereux-Cooke]]

== Science Advisory Board ==
* Professor [[Stephen Holgate]]
* Professor [[Martin Tobin]]
* Professor [[Julia Newton]]
* Professor [[Brian Hughes]]
* Professor [[Benedicte Alexandra Lie]]

==Publications==
None yet.

==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]]
*[[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:Notable studies]]

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