Update: UK ME/CFS Biobank Steering Group June 2025

Matters Arising 

Dr Shepherd:

• DHSC: An embargoed version of the DHSC Delivery Plan has been shared with group members for final feedback. It is expected to be officially released at the end of June. Charles Shepherd anticipates minimal changes to the current version. There is likely to be disappointment, particularly among the ME/CFS community, due to the plan’s limited scope and ambition.
• Stocktake report update (for NHS referral services): Charles informed the group that the only way to obtain the stocktake report was through a Freedom of Information (FOI) request. The version received was heavily redacted, but still revealed key concerns. The stocktake process was flawed, with the wrong questions asked, a low response rate from ICBs (Integrated Care Boards), and overall poor methodology. Charles noted it was clear why NHS England chose not to publish the report. Despite NHS England’s refusal to release it, the redacted report is available on the ME Association (MEA) website for those interested.
• Benefits reform: Charles said The MEA has produced a response to the Green Paper and we have been asked to submit a response to the Work and Pensions Committee.

Biobanking, Researcher outreach and future release plans of stored samples 

Caroline Kingdon: 

• Shared the progress on applications to access samples from the UK MEB. 
• Caroline let the group know the new Biobank video is now available to view on the CureME website.  In the video there is a short clip included where Hanish Anand, manager at the Biobank, mentions the CureME Biobank as one of their most active clients. 

Research grants, progress reports and grant applications 

Dr Jackie Cliff updated on her project which investigates whether reactivation of the herpesvirus HHV-6B plays a causal role in ME/CFS symptoms by tracking viral activity in saliva and studying immune cell responses in affected individuals compared to healthy controls (see more here): 

• Sample Processing: All saliva samples have been received. DNA extraction has been completed by Sook and team, and this process will be repeated. 
• Analysis Plan: Work has begun on developing an analysis plan. 
• New Sample Collection: Blood and saliva will now be collected from some participants at two time points—this is a new approach that allows for comparative analysis. 
• Long Covid Recruitment: Recruitment of participants with Long Covid for Aim 3 is ongoing. 
• National Institutes of Health (NIH) Funding Concerns: There is uncertainty around NIH funding. Some projects have had funding halted, but the team is hopeful theirs will not be affected. 
• Yearly Report: The team is preparing their annual report for NIH. 
• Sub-contract Issues: There are concerns about the sub-contract between LSHTM and Brunel, as NIH has expressed dissatisfaction with similar arrangements elsewhere. A new funding approach is being developed. 

Free Sample Competition: 

Caroline Kingdon/Ella Abken: 

• Timeline:
  • Closing date: 31st July
  • Review of applications: August
  • Outcome notification: Early September
• Panel Review:
  • Jackie, who succeeded Eliana on the Guardian Board three years ago, will help review applications.
  • To manage potential conflicts of interest and workload, the panel will be broadened. Katrina will also be involved, and Caroline will contact her separately.
• Application Process:
  • Initial applications will be short.
  • Strong preliminary applications will be invited to submit a full application for Guardian Board review.
• Sample Distribution:
  • While two winners will be selected, consideration will be given to releasing samples to others who submit strong applications.
  • The Steering Group sees it a priority to distribute the samples to robust research projects.
  • Successful applicants will be expected to cover transport costs for the samples.
  • The Steering Group approved this approach.
• Biobank Costs & Sample Management:
  • Storage costs at RFH Biobank are increasing.
  • Some unused samples (especially from non-qualifying donors) may be discarded.
  • Valuable samples like EDTA PBMCs will be carefully considered before release.
• Biobank Agreement:
  • RFH Biobank has honoured previous agreements but will now implement a new cost-reflective agreement.
  • Rates are expected to remain reasonable.
• Outreach:
  • Researchers should be informed that pre-COVID samples are available at a good rate, enhancing their research value.

Biobank Funding

Charles has discussed Biobank funding with the Trustees, who are open to receiving a funding application covering January 2026 to December 2027. He suggested starting with a one-page preliminary application including cost estimates. Charles is also willing to arrange a Zoom call if needed. The goal is to submit the final application for consideration at the MEA Trustees' October meeting.

Any Other Business: 

• None

The Steering Group will meet again on Wednesday 17^th September, 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 £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. 

More information 

• Update: UK ME/CFS Biobank Steering Group | April 7, 2025 
• Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid | April 2, 2025 
• MEA and MERUK Research: Explaining Electrophysiological Properties of Cells in Health and Disease | August 15, 2024 
• The ME Association and ME Research UK announce funding for a study that aims to create a diagnostic test for ME/CFS | October 30, 2023 
• Salivary DNA Loads for Human Herpesviruses 6 and 7 Are Correlated with Disease Phenotype in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | August 6, 2021