The ME Association (MEA) has invested £1.095m in the UK ME/CFS Biobank (UKMEB) since it was established in 2011 and continues to support its operational costs — ensuring this vital resource remains at the forefront of groundbreaking research.
The Cure ME Steering Group meets quarterly to discuss matters relating to the UKMEB and its most recent meeting was on 17 December.
The CureME research team are based at the London School of Hygiene & Tropical Medicine, with the clinical team within the Department of Clinical Research, while lab colleagues work within the Department of Life Sciences at Brunel University.
The team is overseen by a Steering Committee that includes researchers, partner charities (The MEA and MERUK), and people with lived experience. It is chaired by Dr Charles Shepherd from the MEA.
Matters arising:
- DHSC Delivery Plan: Charles updated the group on the DHSC delivery plan. NHS England is developing a referral service clinical pathway template for the diagnosis and management of people with mild/moderate ME/CFS, but there has been no update; a small group will be meeting with NHS England and will request one.
- There was agreement that a referral service plan for people with severe ME is needed. Charles said this is being raised with relevant individuals, and MPs have been putting down questions.
- Charles noted a group pressuring research funders have reported there has been limited progress; a further meeting is planned. It was suggested Jackie should be involved with this group instead of Hazel. Charles agreed to request Jackie be added to the mailing list.
- Jackie reported pneumonia a showcase meeting at the Royal College of Physicians with NIHR and MRC, attended by Steering Group members in person and online.
- “Can We Reach Consensus on a Research Case Definition for ME/CFS?”: NIHR and MRC keen to support further work on research criteria. Nuno Sepúlveda and Leonard Jason are interested in contributing, but a UK lead is needed. Caroline and Jackie will discuss.
- Danny Altmann proposal: The Rosetta Stone study has now started. MEA announcement received lots of media coverage.
- Biobank Funding: The contract is being finalised. Mike Mitchell (MEA), who is a lawyer, suggested a meeting to review details. Susan to arrange.
- Photo Exhibition: Charles reported the London exhibition Lives We Cannot Live by Jeremy Jeffs was very successful, with potential plans to tour it nationally.
Biobanking, Researcher outreach and future release plans of stored samples:
- Caroline’s Retirement Plans: Caroline confirmed she plans to reduce her FTE considerably at the end of February; the team is assessing future needs and possible recruitment.
- Biobank Samples: Caroline shared an updated table of samples used and those remaining at the Biobank. The group discussed sample types originally chosen. It was agreed that rarely requested samples could be transferred to another organisation following a proper process and at no cost, provided they can be safely stored; this could reduce costs.
Research grants, progress reports and grant applications:
Dr Jackie Cliff updated on the following projects:
- Electrophysiology project: Jackie reported with the time taken to sort out the NIH project and having to move the lab work to LSHTM it has meant things are a bit behind on this project.
See more information on this project here - HHV6B Project: Jackie reported that she is back at LSHTM working 0.2 FTE and Sook 0.9 FTE on the NIH HHV6B project. LSHTM has acquired a new, improved cytometry machine which has worked out well for the project. Recruitment of Long Covid participants is ongoing. A paper has been published in the Journal of Translational Medicine, and another paper developed with input from biostatisticians Alice Ballard and James Gilbert is in progress, with submission planned for early in the new year.
See more information on this project which investigates whether reactivation of the herpesvirus HHV-6B plays a causal role in ME/CFS symptoms here. - Jo Cambridge/Eliana Lacerda Project: Jo has sent Jackie the data. Just a couple of things to be sorted and then Jo and Jackie are hoping to bring the paper together. Jackie said it is top of her priorities and once the paper is finalised Jo will be ready to submit the final report to MERUK.
- British Society for Immunology Congress: Jackie Cliff attended this conference. She said there was a lot of discussion on Long Covid, but a couple of groups are looking at biomarkers for ME/CFS. Jackie is going to reach out to them.
Any Other Business:
- UK Biobank and ME/CFS Research: Charles raised how the UK Biobank works. Members explained that no samples are released; approved researchers access data via UK Biobank servers. There is a fee, which can be high, with reduced rates for students.
- Samples from Children and Adolescents: Charles raised at a recent meeting he attended questions about why samples aren’t collected from young people. It was explained this was due to ethical complexities around parental consent, so the Biobank initially focused on adults, though collecting from children and adolescents would be possible with appropriate ethics approval.
- The Steering Group will meet again on Wednesday 17th March, and will provide an update shortly afterwards.
About CureME:
CureME is at the forefront of participatory epidemiological, clinical and laboratory research into Myalgic Encephalomyelitis (ME/CFS) in the UK.
Its research has focused on improving recognition, diagnosis and treatment of ME/CFS, and led to the creation of the UK’s first ME/CFS Biobank (UKMEB) – which is open to external researchers across the globe.
The ME Association Ramsay Research Fund financially support the UKMEB and has done since it was established in 2011. It currently costs around £100,000 each year to keep the UKMEB operational.
Biological (blood) samples and clinical data from people with ME/CFS and MS (as well as healthy controls) are held in frozen storage at the Royal Free Hospital, while the Biobank data is stored in a secure database at the London School of Hygiene & Tropical Medicine.
Over 30,000 aliquots (a portion of the total sample) of blood have been collected using rigorous and consistent scientific protocols. These samples are used by the UKMEB team and other researchers in the UK and by an increasing number overseas.
More information:
- Update: UK ME/CFS Biobank Steering Group | September 17, 2025
- Update: UK ME/CFS Biobank Steering Group | July 18, 2025
- Update: UK ME/CFS Biobank Steering Group | April 7, 2025
- DHSC: Final Delivery Plan | July 22 , 2025
- Driving discovery: The ME Association invests £1.1m into pioneering research programme! | December 10, 2025
- Research: New Study to Harmonise Research Definitions in ME/CFS | September 12, 2025
- Research: Second-Phase Funding to Advance the Development of a Diagnostic Test for ME/CFS | September 10, 2025
- Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid | April 2, 2025
- Salivary DNA Loads for Human Herpesviruses 6 and 7 Are Correlated with Disease Phenotype in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | August 6, 2021