The ME Association (MEA) has invested £875,000 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 September. 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 ME Research UK), and people with lived experience. It is chaired by Dr Charles Shepherd from the ME Association.
Matter arising
- DHSC Delivery Plan: now published; Dr Charles Shepherd informed that charity representatives will be attending a meeting with Lee McGill (DHSC) on October 22nd 2025 (This meeting went ahead as planned)
- New Project – PRIME: funded by the MRC, starting in October, a 4-year project aimed at building ME/CFS research capacity in the UK.
- Benefits Reform: Dr Shepherd said this is still a concern and the MEA is working with a group led by Stephen Timms (Minister of State for Social Security and Disability) to review eligibility criteria for PIP payments.
- HHV6B Long Covid Recruitment: ongoing and progressing well.
- Biobank Funding: CureME team submitted an outline application to MEA for continued biobank funding.
Biobanking, Researcher outreach and future release plans of stored samples
Caroline Kingdon:
Free Sample Competition:
- Generated significant interest with many applications.
- A small committee reviewed and scored applications.
- Dimitri Pshezhetskiy, who has used samples from the Biobank in his research, was a key committee member.
- The winners have been announced:
- Dr. Kempuraj Duraisamy (Bates Hornman Center / Nova Southeastern University)
- Sarah Annersley (La Trobe University, Victoria, Australia)
- Other applicants who submitted high quality proposals were invited to submit full applications; some may receive samples at a reduced rate or at no cost.
Sample Inventory & Management:
- Caroline shared lists of samples that have been sent out for research and those remaining at the Biobank.
- A small group will be formed to review these remaining samples and propose effective management strategies, especially to reduce storage costs.
- Possibility of transferring some samples to other biobanks for quality control purposes.
- Caroline and Ella are updating the sample data, focusing on PBMCs.
- Current storage costs exceed £20,000 annually.
- Luis emphasised the value of having samples spanning over 10 years, including pre- and post-COVID samples.
Caroline’s Retirement Plans:
- Caroline is hoping to move to a flexible contract focusing on sample collection visits and other tasks around the UKMEB.
- About 100 participant visits still need to be completed.
- Ella will take on many of Caroline’s current UKMEB responsibilities and will continue to be responsible for data releases.
Longitudinal Data Collection:
- Funding constraints will limit regular sample collection going forward.
- However, the team would like to continue to gather longitudinal data on individuals with stored samples.
- Luis noted this will require some funding but is less costly than collecting new samples.
- This approach will enhance the existing dataset.
Research grants, progress reports and grant applications
Dr Jackie Cliff updated on her on the following projects:
- Electrophysiology Project: moving to Brunel University; logistical arrangements in progress; ethics approval underway. (See more information on this project here)
- HHV-6B NIH Funding: NIH changed policy on subcontracts; now the lab work will be carried out at LSHTM. Staff working on the project at Brunel will need to move to LSHTM to carry out this work. (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: progressing; paper being prepared for submission to the Journal of Translational Medicine.
Further Items
- Photo Exhibition: the MEA photo exhibition ‘Lives We Cannot Live’ by Jeremy Jeffs opening on 24th September (this event has taken place)
- Research Case Definition for ME/CFS: Caroline reported Prof. Jason’s work which she has been involved in with Adam Lowe is progressing well with over 2,000 responses to the survey. It will feature at the IACFS/ME conference. (See more information on this project here)
- Filming Projects: CureME team invited to participate in several films on severe ME by different producers, including Jeremy Jeffs, UMC Amsterdam, and Northern Ireland’s Department of Health.
Any other business (AOB): None
The Steering Group will meet again on Wednesday 17th December, and will provide an update shortly afterwards.
About Cure ME
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 £80,000 each year to keep the UKMEB operational.
The ME Association Ramsay Research Fund financially support the UKMEB and has done since it was established in 2011. It currently costs around £80,000 each year to keep the UKMEB operational.
Biological 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 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.
Further Information
- The ME Association: Update: UK ME/CFS Biobank Steering Group June 2025 | July 18, 2025
- The ME Association: Update: UK ME/CFS Biobank Steering Group | April 7, 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
- Research: Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid | April 2, 2025
- UK ME/CFS Biobank – Free Sample Competition: Winners | October 20, 2025
- Salivary DNA Loads for Human Herpesviruses 6 and 7 Are Correlated with Disease Phenotype in ME/CFS | August 6, 2021