The ME Association (MEA) has supported the operational costs of the UK ME/CFS Biobank (UKMEB) since 2009. It was recently agreed to continue this arrangement until at least 2027. This will bring the MEA’s total investment in this vital resource to £1.1M.
The UKMEB is managed by the CureME research team from the London School of Hygiene & Tropical Medicine, with a clinical team at the Department of Clinical Research, and lab colleagues at the Department of Life Sciences at Brunel University.
The Steering Group (SG) meets quarterly to discuss matters relating to the UKMEB and its most recent meeting was on 17 March. The Group is chaired by Dr Charles Shepherd (Trustee and Hon. Medical Advisor to the MEA) and others from the MEA, ME Research UK and individuals with lived experience.
1.UKMEB Steering Group Summary Minutes 17 March 2026
Present: Charles Shepherd (CS), Caroline Kingdon (CK), Cecilia Finnerty (CF), Susan Sheedy (SS), Jackie Cliff (JC), Luis Nacul (LN), David Newton (DN), Katrina Pears (KP), Hazel Dockrell (HD), Jonathan Davies (JD), Russell Fleming (RF), Barbara Saunders (BS), Ji Sook Lee (JSL), Nina Muirhead (NM), Ella Abken (EA)
Apologies: Sue Waddle and Martine Ainsworth-Wells
Matters Arising
Membership: BS, a lived experience member, stepped down after many years' service. Those present wished her the very best and thanked her for the valuable contribution she had made during her time with the Group. RF has now joined the SG. He is now the MEA Ramsay Research Fund Manager.
A Rosetta Stone to Decode Post-Viral Sequalae in Long Covid and ME/CFS:
- The Rosetta Stone study with Prof Altmann and Imperial College, London, is progressing well. More information on this MEA project here
Neurological and Inflammatory Fluid Biomarkers of ME/CFS and Long Covid:
- It was agreed it would be good for Sophie Hicks (UCL) who is leading this study, to get in touch with Professor Altmann at Imperial to see if they could collaborate. More information on this MEA project here.
DHSC Delivery Plan on ME/CFS:
- CS circulated the link to an updated e-learning module ‘Supporting people with severe ME/CFS’. It is currently just available for healthcare professionals with an NHS email.
- CS said he hasn’t seen the new tidied up version of the module, but he thinks it is quite a good module and would be helpful if it was made available more widely.
- He continues to be a member of different groups inputting on the DHSC delivery plan. A meeting has been held with a member of the education department at the Royal College of Physicians with another one being planned. Materials around ME/CFS are being considered, e.g., podcast, webinar, etc.
- CS reported he attended an interesting research meeting. The meeting was held in Winchester, but he joined online. It was organised by a member of the patient community, Opal Webster-Philp. The attendees included Chris Ponting, Stephen Holgate, Danny Altmann and Rob Wust. He said there continues to be a push for MRC to provide more funding.
Can we reach consensus on a research case definition for ME/CFS?
- CK reported we are still looking for someone from the UK who could lead on this work. She will reopen the conversation with Lenny Jason.
- JC thinks it would be a good to raise with the DISCOVER-ME group.
- More information on this MEA project here.
Operational costs for the UK ME/CFS Biobank
- The MEA had previously agreed to continue with its financial support of the UKMEB.
- Funding for both 2026 and 2027 will total £110,395. RF will be the CureME team’s main contact at the MEA for this award.
- The MEAs total commitment to the UKMEB since 2009 will be £1.1M.
- More information on this MEA project here.
2.Biobanking, Researcher outreach and future release plans of stored samples
- CK’s Retirement Plans: It will be a gradual retirement. She will continue reducing her hours over the remainder of the year and will be on hand to support EA who will be taking on more of the Biobank work.
- Future of the Biobank: it was agreed a separate meeting will be set up to discuss the future of the Biobank (RF to initiate).
- Biobank Samples: EA delivered a short presentation on a new online system that has been introduced to help identify samples for release for use in research. This new search system is proving to be very good and will save a lot of time.
3. Research grants, progress reports and grant applications
Dr Jackie Cliff updated on the following projects:
The Electrophysiology of ME/CFS:
JC thanked the MEA and MERUK for agreeing to a no cost extension for this project. She said they are currently recruiting two new people to work on it.
Mike Hughes and Fatima Labeed, both based in the UAE, are integral to the project. She emailed them last week and is waiting to hear back.
A piece of equipment needed for the project is now at Brunel.
- See more information on this MEA and MERUK project here.
HHV6B Project:
JC said it is settling down after the lab component moving back to LSHTM. Dr Ji-Sook Lee is now mostly based at LSHTM but continues to have a small FTE (0.1) at Brunel. JC is mainly based at Brunel but spends one day a week at LSHTM.
Dr Lee is learning how to use the new equipment at LSHTM needed for the project. A member of the core LSHTM lab team, Chris Chiu, will be spending dedicated time working on the project alongside Sook.
JC updated the group on the Biostatistician recruitment. She said they have been very impressed with the quality of applications. Five candidates have been shortlisted, and the interviews are planned for 31st March.
Jo Cambridge Project: Jackie and Jo have been making good progress with the paper, which examines how the antibodies in ME/CFS patients’ blood differ from those in healthy people and between milder and more severe cases. Jackie said it should be ready to share before the next Steering Group meeting.
Any Other Business (AOB)
Publications:
The team gave an update on other papers currently in progress. Dr Lee and HD are working on a paper coming out of the longitudinal data. EA, CK and Prof Sarah Tyson (Manchester) have submitted a paper to Frontiers on home visits.
ME/CFS awareness week relations group
This item was raised by Caroline, but she had left the meeting at this stage but there is a Biobank Marketing meeting coming up and it can be discussed then.
Horizon grants:
- INNOVATE-ME Luis informed the group we have been invited to be part of an application for a Horizon grant, INNOVATE-ME. It is a consortium with several colleagues across Europe and being led by De Sanctis Juan Bautista, Univerzita Palackeho v Olomouci in Czechia. It will be very competitive with 200 groups competing for 5 grants. Each award will be approx. €6-8m.
- DISCOVER-ME As discussed above the Discover-ME proposal has been awarded. LSHTM has been included as one of the partners and we are currently working on getting retrospective internal approval in place. The lead is Eva Untersmayr-Elsenhuber, Medical University of Vienna.
Future of the Biobank: it was agreed it would be helpful to hold a separate meeting to discuss the future of the Biobank. RF will be in touch about getting it set up.
About CureME
CureME is at the forefront of participatory epidemiological, clinical and laboratory research into Myalgic Encephalomyelitis (ME/CFS) in the UK.
The team’s research has focused on improving recognition, diagnosis and treatment of ME/CFS, and it 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’s Ramsay Research Fund financially supports the UKMEB and has done since before it was established in 2011. It currently costs £110,000 each year to maintain the operation, and the MEA recently agreed to continue with funding until at least the end of 2027.
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.
More Information
- Update: UK ME/CFS Biobank Steering Group | February 18, 2026
- 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
- 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