DecodeME

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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