Update: UK ME/CFS Biobank Steering Group: June Meeting

The ME Association (MEA) has supported the operational costs of the UK ME/CFS Biobank (UKMEB) since 2009.  

We have agreed to continue this arrangement until at least the end of 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 at 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 progress and other matters relating to UKMEB operations and performance.  

The SG is chaired by Dr Charles Shepherd (Trustee and Hon. Medical Advisor to the MEA), and its most recent meeting was in June. 

UKMEB Steering Group Summary Minutes: 17 June 2026 

Present: Charles Shepherd (CS), Cecilia Finnerty (CF), Susan Sheedy (SS), Jackie Cliff (JC), Katrina Pears (KP), Hazel Dockrell (HD), Jonathan Davies (JD), Russell Fleming (RF), Ella Abken (EA). 

Apologies: Martine Ainsworth-Wells (MAW), Caroline Kingdon (CK) and David Newton (DN). 

Matters Arising 

1. A Rosetta Stone to Decode Post-Viral Sequalae in Long Covid and ME/CFS:  
   CS reported there had been a meeting with Danny Altmann and Rosemary Boynton and they were very complementary about the work of the Biobank. More information on this MEA project here. 

2. Neurological and Inflammatory Fluid Biomarkers of ME/CFS and Long Covid:  
   JC will follow up with Sophie Hicks (UCL) re connecting with Danny Altmann. More information on this MEA project here. 

3. DHSC Delivery Plan on ME/CFS:  
   CS gave an update on the work of the sub-groups: 
   • He said they are pushing ahead on a service delivery protocol. Severe ME now part of the template, but members of the group haven’t seen the wording yet to see how this category has been included. He said they are also chasing NHS England and trying to see if there will be a service set up for those who are severely affected.   
   • He reported that Baroness Ros Scott had secured a debate in the House of Lords for late tomorrow morning (18th June) to discuss the treatment and research into very severe ME. He said a briefing paper had been provided to Baroness Scott in advance on the key action points.  
   • Work also continues with the education department at the Royal College of Physicians to look at producing materials on ME/CFS such as podcasts, webinars, etc. He reported NM was also now a part of this sub-group. 

4. Can we reach consensus on a research case definition for ME/CFS? 
   CS said Lenny Jason has confirmed at this stage they won’t require further funding from the MEA. More information on this MEA project here. 

5. Biobanking, Researcher outreach and future release plans of stored samples 
   • CK’s usual report was circulated ahead of the meeting. 
   • EA gave a presentation and went into more detail on the recent work of the Biobank:  
     • She reported that the paper she has produced with CK and Sarah Tyson has now been published by Frontiers and will be open access.  
     • It was observed there has been an increase in the number of applications for samples. EA said this will be partly down to the activities around marketing the work of the team including redoing the website, attending conferences, the free sample campaign, etc. 
     • EA took the opportunity to say a big thank you to The MEA on behalf of the CureME team for the support they have provided. 

6. Research grants, progress reports and grant applications 
   Dr Jackie Cliff updated on the following projects: 
   • a: The Electrophysiology of ME/CFS:   
     JC reported the interviews for a post-doctoral fellow for this project have now taken place and they will be offering the post to a very good candidate.  
     There is also another person joining who has previously worked with JC’s team and she is hoping they will start at the same time as the post doc.  
     She said once those two people are in post the project should really advance.  
     Fatima Labeed, one of the principal investigators on this project who is based in the UAE, has an honorary contract at Brunel and will be coming to do some lab work in July.  
     See more information on this MEA and MERUK project here. 
   • b: Human Herpesvirus 6B in ME/CFS pathogenesis: 
     JC reported the HHV6B project – a $2M study funded by the National Institutes of Health in America – is now coming towards the end of its 4^th year.  
     She said she is pleased to say members of the team who were previously based at Brunel are now feeling settled back in at LSHTM.  
     JC reported an excellent biostatistician, Qingying Shu joined the team on the 1st May and has already made good progress with data analysis.  
     She added that an Associate Professor, Chrissy Roberts who is already a member of staff at LSHTM has joined the team.  
     There is also a flow cytometry expert, Chris Chiu working at the School who is now spending dedicated time on the project working alongside Ji Sook Lee in the lab.  
   • c: Jo Cambridge Project: 
     JC gave her apologies for the delay in the report being submitted. 
   • d: DISCOVER-ME (E7.5M EU Horizon Grant):  
     JC updated the Steering Group on the Biobank’s involvement with Discover-ME.  
     JC and CK attended a pre-kick off meeting with the project team.  
     The planned start date for the project is 01 July and at that stage there should be an announcement made.  
     Once the samples to be released for this project have been confirmed the details will go to Steering Group to be formalised. 
     Biological evidence and mechanism-based disease classification for the improved diagnosis, prognosis and treatment of ME/CFS (DISCOVER-ME): 
     • About the EU Horizon grant and project. 
     • Quadram Institute press release (30 June 2026). 
       

7. Any Other Business 
   • a: Future of the Biobank:  
     It was agreed that a presentation will be made to the SG once discussions around the future of the Biobank are complete. 

END 

Learn more about the March Steering Group meeting.