DecodeME
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
DecodeME is a UK-based genome-wide association study (GWAS), investigating the DNA 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.[2]
DecodeME is the largest ever study investigating biological differences in people with ME/CFS. It seeks to find genetic factors that may help to determine the causes of ME/CFS and guide treatment development.[3]
Funding[edit | edit source]
UK's Medical Research Council and the National Institute for Health Research have provided £3.2 million to fund the DecodeME study.[4]
Patient criteria[edit | edit source]
DecodeME used questionnaires to screen patients. Participants must have been diagnosed with ME/CFS by a health professional. They must fullfill the National Academy of Medicine (NAM) criteria (formerly called Institute of Medicine) or the 2003 Canadian Consensus criteria (CCC), both of which require post-exertional malaise, and must be at least 16 years of age.
Participants with any other diagnoses which could cause chronic fatigue were excluded.
DecodeME planned to recruit at least 20,000 people with ME/CFS which began before the 2019 COVID pandemic and 5,000 whose ME/CFS arose after infection with the SARS-CoV-2 virus.[5]
Participation was limited to those living in the United Kingdom.[6]
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.[7]
Timeline[edit | edit source]
- Jul 2020, DecodeME website launched, patients able to sign-up for news and give contact details, study recruitment planned to start on Mar 2021.[8]
- 26 Aug 2020, Official start expected in "very early 2021".[9]
- Nov 2021, Announcement that recruitment has been delayed until 2022, and will start with a small invited group first.[10]
- 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.[11][12]
- 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.[13]
- 14 Jun 2021, Ethics approval granted.[14][15]
- Jan 2022, Announcement that phase 1 due to begin on Jan 31st with 50 severe and very severe ME patients, plus 500 randomly selected participants who registered online.[16]
- Mar 2024, Due to operational challenges, the study's deadline was extended by one year, to August 2025.[17]
- Apr 2024, DecodeME announces process to share questionnaire and genetic data with eligible researchers not affiliated with the study.[18]
Results[edit | edit source]
Criticism[edit | edit source]
Investigators[edit | edit source]
- Chris Ponting - Principle investigator
- Sonya Chowdhury - Co-investigator (PPI), CEO of Action for ME
Patient and Public Involvement Steering Group[edit | edit source]
- 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, 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[19]
Trial management group[edit | edit source]
- Professor Chris Ponting, Principal investigator
- Sonya Chowdhury, Action for ME CEO, co-investigator (PPI)[19]
- Andy Devereux-Cooke, from the PPI[19]
Science Advisory Board[edit | edit source]
- Professor Stephen Holgate
- Professor Martin Tobin
- Professor Julia Newton
- Professor Brian Hughes
- Professor Benedicte Alexandra Lie[19]
Publications[edit | edit source]
- 2023, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study.[20] - (Full text)
News and articles[edit | edit source]
- Jun 2020, UK to launch genetic study of Chronic Fatigue Syndrome - The Guardian
- Jun 2020, Chronic Fatigue Syndrome - search for genetic clues - The Times
- Jun 2020, Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study - 25% ME Group
- Jun 2020, £3.2 million for largest ME/CFS DNA study ever - #MEAction
- Jun 2020, DecodeME – the largest ever ME/CFS DNA study - ME Research UK
Webinars[edit | edit source]
- 18 Dec 2020, DecodeME Winter Webinar[21]
- 14 Apr 2021, DecodeME April Webinar[22]
Online presence[edit | edit source]
See also[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
- ↑ "The Science Behind the DNA Study". DecodeME. Retrieved June 5, 2024.
- ↑ "About the ME/CFS Biomedical Partnership". DecodeME. Retrieved June 5, 2024.
- ↑ 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.
- ↑ Support, Itineris (June 22, 2020). "Patients, scientists and advocates celebrate £3.2m funding for DecodeME, the largest ever ME/CFS DNA study". DecodeME. Retrieved June 5, 2024.
- ↑ Devereux-Cooke, Andy; Leary, Sian; McGrath, Simon J.; Northwood, Emma; Redshaw, Anna; Shepherd, Charles; Stacey, Pippa; Tripp, Claire; Wilson, Jim; Mar, Margaret; Boobyer, Danielle (July 19, 2022). "DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome". BMC Neurology. 22 (1): 269. doi:10.1186/s12883-022-02763-6. ISSN 1471-2377. PMC 9294749. PMID 35854226.
- ↑ "Can people from outside the UK participate?". DecodeME. Retrieved June 5, 2024.
- ↑ DecodeME. "Get Involved". DecodeME. Retrieved June 23, 2020.
- ↑ "Join our webinar Q&A". DecodeME. July 2, 2020. Retrieved November 13, 2021.
- ↑ 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. - ↑ DecodeME (November 11, 2021). "Update: DecodeME to launch in January 2022". DecodeME. Retrieved November 13, 2021.
- ↑ DecodeME (November 30, 2020). "Partnership update". DecodeME. Retrieved November 13, 2021.
- ↑ DecodeME. "About the ME/CFS Biomedical Partnership". DecodeME. Archived from the original on July 16, 2020. Retrieved November 13, 2021.
- ↑ "Why patient involvement is crucial". DecodeME. 2021. Retrieved March 26, 2022.
- ↑ "DecodeME". Health Research Authority. Retrieved June 5, 2024.
- ↑ "DecodeME". Health Research Authority. June 14, 2021. Retrieved March 26, 2022.
- ↑ "Great news! DecodeME opens for first participants this month". DecodeME. January 2022. Retrieved March 26, 2022.
- ↑ Connolly, Anne (March 7, 2024). "DecodeME completion date extended to August 2025". DecodeME. Retrieved June 5, 2024.
- ↑ Connolly, Anne (April 29, 2024). "DecodeME launches data access process". DecodeME. Retrieved June 5, 2024.
- ↑ 19.0 19.1 19.2 19.3 "About the ME/CFS Biomedical Partnership". DecodeME. Retrieved November 13, 2021.
- ↑ 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.
- ↑ DecodeME Winter Webinar, retrieved May 12, 2021
- ↑ DecodeME April Webinar, retrieved May 12, 2021
