DecodeME

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Decode ME logo

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]

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.[20] - (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. ↑ "The Science Behind the DNA Study". DecodeME. Retrieved June 5, 2024.
  2. ↑ "About the ME/CFS Biomedical Partnership". DecodeME. Retrieved June 5, 2024.
  3. ↑ 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.
  4. ↑ 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.
  5. ↑ 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.
  6. ↑ "Can people from outside the UK participate?". DecodeME. Retrieved June 5, 2024.
  7. ↑ DecodeME. "Get Involved". DecodeME. Retrieved June 23, 2020.
  8. ↑ "Join our webinar Q&A". DecodeME. July 2, 2020. Retrieved November 13, 2021.
  9. ↑ 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.
  10. ↑ DecodeME (November 11, 2021). "Update: DecodeME to launch in January 2022". DecodeME. Retrieved November 13, 2021.
  11. ↑ DecodeME (November 30, 2020). "Partnership update". DecodeME. Retrieved November 13, 2021.
  12. ↑ DecodeME. "About the ME/CFS Biomedical Partnership". DecodeME. Archived from the original on July 16, 2020. Retrieved November 13, 2021.
  13. ↑ "Why patient involvement is crucial". DecodeME. 2021. Retrieved March 26, 2022.
  14. ↑ "DecodeME". Health Research Authority. Retrieved June 5, 2024.
  15. ↑ "DecodeME". Health Research Authority. June 14, 2021. Retrieved March 26, 2022.
  16. ↑ "Great news! DecodeME opens for first participants this month". DecodeME. January 2022. Retrieved March 26, 2022.
  17. ↑ Connolly, Anne (March 7, 2024). "DecodeME completion date extended to August 2025". DecodeME. Retrieved June 5, 2024.
  18. ↑ Connolly, Anne (April 29, 2024). "DecodeME launches data access process". DecodeME. Retrieved June 5, 2024.
  19. ↑ 19.0 19.1 19.2 19.3 "About the ME/CFS Biomedical Partnership". DecodeME. Retrieved November 13, 2021.
  20. ↑ 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.
  21. ↑ DecodeME Winter Webinar, retrieved May 12, 2021
  22. ↑ DecodeME April Webinar, retrieved May 12, 2021

an organism's complete set of DNA, including all of its genes[1]

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

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See National Academy of Medicine.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

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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