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 23 September 2026.
The SG is chaired by Dr Charles Shepherd (Trustee and Hon. Medical Advisor to the MEA) and comprises other representatives from the MEA, representatives from ME Research UK (MERUK) and individuals with lived experience.
UKMEB Steering Group Summary Minutes 23 September 2026
Present:
MEA: Charles Shepherd (CS), Katrina Pears (KP), Russell Fleming (RF).
MERUK: David Newton (DN), Sue Waddle (SW).
LSHTM: Caroline Kingdon (CK), Susan Sheedy (SS), Ella Abken (EA).
Brunel: Jackie Cliff (JC).
Lived Experience: Cecilia Finnerty (CF).
Apologies: Hazel Dockrell (HD) and Martine Ainsworth-Wells (MAW).
Jo Cambridge
The meeting started with the group taking a moment to remember Professor Jo Cambridge who had sadly passed away recently. Jo had dedicated her later career to investigating immune system dysfunction and energy metabolism in ME/CFS at University College London and had worked closely with the CureME biobank team. It was noted there was a lovely obituary for Jo in the Guardian.
Matters Arising
1: MEA research projects utilising UKMEB samples:
- A Rosetta Stone to Decode Post-Viral Sequalae in Long Covid and ME/CFS:
CS reported the MEA, particularly RF, have been in close contact with Danny Altmann. The study is awaiting ethical approval and will shortly announce recruitment for the public cohort and Patient Advisor Group (PAG). More information on this MEA project here. - Can we reach consensus on a research case definition for ME/CFS?
CS said the MEA had a meeting with Lenny Jason, and he is keen to do further analysis on what came out of the survey. The MEA have agreed a non-cost extension for this project. CK said she thinks Lennie is keen to bring it to the IACME conference which will be taking place next year. More information on this MEA project here.
2: DHSC Delivery Plan on ME/CFS:
CS gave an update on the work of the sub-groups.
- Forward ME and the MEA have had lots of meetings with DHSC and NHS England and have signed off the template for the referral service specification in the delivery plan.
- CS said with Yvette Cooper, who has an interest in ME, now the new Health Secretary they are hoping she can push forward the creation of services in line with NICE guidelines and bring existing services in line with them.
- CS said a ministerial group is needed to develop a plan for people with very severe ME. There is a lot of action coming out of the delivery plan still to be carried forward. CS said it is now very difficult to get anything done at NHS England with it being disbanded.
3: Biobanking, Researcher outreach and future release plans of stored samples
CK’s usual report was circulated ahead of the meeting.
- Ella’s presentation: KP and RF thought it would be good to include EA’s presentation where she explained how the portal works and the developments that have been made so it now works a lot better and has made the selection of samples for release quicker and easier. They think this would be a good way to promote the Biobank.
- New applications: CK has circulated some new applications received to the Guardian Board for consideration. She said unfortunately, a lot of people asking for serum samples and these will likely be depleted with the Discover-ME project.
CK said we have recently also been getting more requests for data. There still needs to be a meeting to discuss how much we should be charging for data. - Sample storage: CK said she is going to meet with MERUK to discuss promoting the samples.
CK reported that herself and SS had a very good meeting with Hanish at the Royal Free Biobank. It was agreed for the next phase of collecting and processing samples we should continue with the current arrangement, but we could then look at other longer term storage options that would work out less expensive.
4: Research grants, progress reports and grant applications
Dr Jackie Cliff updated on the following projects:
- The Electrophysiology of ME/CFS: this project is based at Brunel University London. JC said there are now two new people, a research assistant and a post doc, working on it. JC said it is progressing well and there is similar work taking place at UEA. See more information on this MEA and MERUK project here.
- HHV6B Project: the team have just one more healthy control to recruit and someone has volunteered who hopefully will be suitable.
The team also reported the Long Covid cohort is now almost complete.
JC gave an update on the HHV6B project. She informed the group we have now received confirmation of our year 5 funding. This is the final year of the project but normally there is no issue with a one year no cost extension, so we are looking at just under two years to complete it. For the renewal we had to provide NIH with a lot of additional information compared to previous years, but this is normal for the final stage.
JC said due to changes in rules if we are looking to approach NIH for further funding beyond the end of the HHV6B project we will need to work with a US partner.
JC informed the group that Qingying Shu who had joined us as biostatistician has been offered a new full-time role outside the School and will be leaving at the end of the month. She said the short time Qingying had been with the team has been very helpful with setting things up. Qingying is planning to stay in touch and will be involved with some of the papers coming out of the research going forward.
JC updated the group on the work being done by JSL. She has been very busy setting up the assays for the next stage and she has also been propagating the HHV6B virus.
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 (MERUK): JC is in the process of completing the manuscript. She is planning to deposit it as a pre-print before Christmas and will dedicate it to Jo. She will then look at submitting for peer review.
- Discover ME: JC and CK will be going to Valencia for the kick off meeting. As well as the project team there will be funder representatives attending the meeting. It is all signed off and the team are in the process of sorting out the samples to be released. There is a meeting tomorrow with Eva Untersmayr, lead PI, to discuss.
5: Any Other Business
- Sequence ME: The Biobank is not involved. Chris Ponting needs £20m to do it. The plan is to sequence 6,000 ME/CFS samples previously collected through Decode ME and then recruit Long Covid participants.
- PRIME Symposium 28-29 Sept: the symposium will be taking place next week with members of the Steering Group attending and speaking at it.
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
- Operational costs of the UK ME/CFS Biobank (UKMEB)
- Update: UK ME/CFS Biobank Steering Group | August 2026, 2026
