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<div style="background-color: white; margin:3em">[[File:DecodeME_logo.png|border|frameless|250px|right|class=darkskin|alt=Decode ME logo]]</div>
[[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 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/£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>   
 
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==
==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" />
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 ==
== Patient criteria ==
DecodeME plans to recruit 20,000 ME/CFS patients, initially from the UK, for a genome-wide association study (GWAS), and compare their data with people in the existing [[UK ME/CFS Biobank]] genetic database.<ref name="Announce25MEGroup" /> Recruitment will begin in 2021, but patients are encouraged to give their contact in advance.<ref name=":0" />
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=":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]].
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 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" />
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==
==Partners==
The UK charities involved as partners are [[Action for ME]] and [[Forward-ME]]. The other partners are the [[London School of Hygiene and Tropical Medicine]], the Medical Research Council Human Genetics Unit, and the UK's National Institute for Health Research.<ref name="website" />
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==
==Results==
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==Investigators==
==Investigators==
*[[Chris Ponting]]  
*[[Chris Ponting]] - Principle investigator
*[[Sonya Chowdhury]] - Co-investigator (PPI), CEO of Action for ME


== Patient and Public Involvement (PPI) Steering Group ==
== Patient and Public Involvement Steering Group ==
* [[Sonya Chowdhury]]
* [[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) 
* [[Andy Devereux-Cooke]]
* [[Andrew Devereux-Cooke|Andy Devereux-Cooke]], co-founder of the [[Science for ME]]  
* [[Margaret of Mar, 31st Countess of Mar]]
* [[Margaret of Mar, 31st Countess of Mar]], representing [[Forward-ME]]
* [[Jim Wilson]]
* [[Jim Wilson]], parent and carer, Associate Member of the [[CMRC]], and former Convenor of the CMRC Patient Advisory Group
* [[Emma Northwood]]
* [[Emma Northwood]], [[ME Association]]
* [[Sian Leary]]
* [[Sian Leary]], advocate with Sheffield ME & Fibromyalgia Group, the [[ME/CFS Priority Setting Partnership]] (PSP) and [[MEActionUK]]
* [[Claire Tripp]]
* [[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>


== Management Group ==
==Trial management group==
* Professor [[Chris Ponting]]
* Professor [[Chris Ponting]], Principal investigator
* [[Sonya Chowdhury]]
* [[Sonya Chowdhury]], [[Action for ME]] CEO, co-investigator (PPI)<ref name="about" />
* [[Andy Devereux-Cooke]]
* [[Andrew Devereux-Cooke|Andy Devereux-Cooke]], from the PPI<ref name="about" />


== Science Advisory Board ==
== Science Advisory Board ==
Line 44: Line 54:
* Professor [[Julia Newton]]
* Professor [[Julia Newton]]
* Professor [[Brian Hughes]]
* Professor [[Brian Hughes]]
* Professor [[Benedicte Alexandra Lie]]
* Professor [[Benedicte Alexandra Lie]]<ref name="about" />


==Publications==
==Publications==
None yet.
* 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==
==News and articles==
Line 57: Line 67:


== Webinars ==
== 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==
==Online presence==
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*[[Chris Ponting]]
*[[Chris Ponting]]
*[[Andrew Devereux-Cooke]]
*[[Andrew Devereux-Cooke]]
*[[Action for ME]]
*[[ME/CFS Gene Study]]
*[[ME/CFS Gene Study]]


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{{reflist}}
{{reflist}}


[[Category:Notable studies]]
[[Category:Research initiatives]]
[[Category:British research initiatives]]

Latest revision as of 16:32, October 12, 2023

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.[1] 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.[1]

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 causing ME and how the illness works.[2]

Funding[edit | edit source]

It is funded by the £3.2 million from the UK's Medical Research Council and the National Institute for Health Research[1][2]

Patient criteria[edit | edit source]

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.[3]

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 criteria.[3] 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 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.[1][3] People who have previously recovered will also not be included.[3]

Partners[edit | edit source]

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.[1]

Timeline[edit | edit source]

  • 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[4]
  • Jun 14, 2021, Ethics approval granted. REC reference 21/NW/0169.[5]
  • 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.[6]
  • 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.[7][8]
  • Nov 2021, Announcement that recruitment has been delayed until 2022, and will start with a small invited group first[9]
  • Aug 26, 2020, Official start expected in "very early 2021".[10]
  • Jul 2020, DecodeME website launched, patients able to sign-up for news and give contact details, study recruitment planned to start on Mar 2021[11]

Results[edit | edit source]

Criticism[edit | edit source]

Investigators[edit | edit source]

Patient and Public Involvement Steering Group[edit | edit source]

Trial management group[edit | edit source]

Science Advisory Board[edit | edit source]

Publications[edit | edit source]

  • 2023, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study.[13] - (Full text)

News and articles[edit | edit source]

Webinars[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 1.2 1.3 1.4 DecodeME. "Get Involved". DecodeME. Retrieved June 23, 2020.
  2. ↑ 2.0 2.1 25% ME Group (June 23, 2020). "Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study" (PDF). 25% ME Group. Retrieved June 23, 2020.
  3. ↑ 3.0 3.1 3.2 3.3 DecodeME. "Frequently Asked Questions". DecodeME. Retrieved June 23, 2020.
  4. ↑ "Great news! DecodeME opens for first participants this month". DecodeME. January 2022. Retrieved March 26, 2022.
  5. ↑ "DecodeME". Health Research Authority. June 14, 2021. Retrieved March 26, 2022.
  6. ↑ "Why patient involvement is crucial". DecodeME. 2021. Retrieved March 26, 2022.
  7. ↑ DecodeME (November 30, 2020). "Partnership update". DecodeME. Retrieved November 13, 2021.
  8. ↑ DecodeME. "About the ME/CFS Biomedical Partnership". DecodeME. Archived from the original on July 16, 2020. Retrieved November 13, 2021.
  9. ↑ DecodeME (November 11, 2021). "Update: DecodeME to launch in January 2022". DecodeME. Retrieved November 13, 2021.
  10. ↑ DecodeME (July 16, 2020). "About the ME/CFS Biomedical Partnership". DecodeME. Archived from the original on July 16, 2020. 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.
    Over the last few months, we have been working hard in preparation for the project officially starting next month.
  11. ↑ "Join our webinar Q&A". DecodeME. July 2, 2020. Retrieved November 13, 2021.
  12. ↑ 12.0 12.1 12.2 12.3 "About the ME/CFS Biomedical Partnership". DecodeME. Retrieved November 13, 2021.
  13. ↑ Bretherick, Andrew D.; McGrath, Simon J.; Devereux-Cooke, Andy; Leary, Sian; Northwood, Emma; Redshaw, Anna; Stacey, Pippa; Tripp, Claire; Wilson, Jim; Chowdhury, Sonya; Lewis, Isabel (August 21, 2023). "Typing myalgic encephalomyelitis by infection at onset: A DecodeME study". NIHR Open Research. 3: 20. doi:10.3310/nihropenres.13421.4. ISSN 2633-4402.
  14. ↑ DecodeME Winter Webinar, retrieved May 12, 2021
  15. ↑ DecodeME April Webinar, retrieved May 12, 2021

genome an organism's complete set of DNA, including all of its genes

phase one A drug trial involving only a small group of humans, often healthy volunteers, to assess drug safety and side effects. Typically 20-80 participants, often using a comparison group.

UK CFS/ME Research Collaborative (CMRC) - A UK group of researchers and ME/CFS patient groups led by Professor Stephen Holgate. Its launch in 2013 was covered by the Science Media Centre. Since 2014, the collaborative sponsors the CFS/ME Research Collaborative Conference.

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