Under a heading “Concerns regarding ME/CFS Strategy in the Final Delivery Plan”, the Horsham MP questions “the absence of strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan”.
He is lead signatory, joined by MP Jo Platt, All-Party Parliamentary Group on ME chair, plus his co-MPs who are Champions for Action for ME.
Letter
Dear Wes
Concerns regarding ME/CFS Strategy in the Final Delivery Plan
As Members of Parliament and Champions for Action for ME, we are writing to express our collective concern about the absence of strategic approach to biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan – ME/CFS are debilitating and affect an estimated 1.3 million people in the UK.
Despite its scale and impact, ME remains severely underfunded and poorly understood. There are currently no diagnostic tests of effective treatments. Research activity is limited, fragmented, and lacks the coordination necessary to deliver meaningful progress. This is particularly troubling given the availability of valuable research assets such s the UK Biobank and DecodeME, and the clear overlap with the growing phenomenon of Long Covid. Evidence suggests that up to half of the people with Long Covid are experiencing symptoms that closely mirror those of ME.
The UK is rightly recognised for its world-leading life sciences sector and yet this strength has not been directed towards solving ME, which continues to leave millions without answers or hope. In 2017, ME was estimated to cost the UK economy £3.3 billions a year. Adjusted for inflation and revised prevalence estimates, that figure is now thought to exceed £20 billion annually, largely due to lost productivity and the pressures placed on carers and the health system.
We believe there is now a clear case for a national, coordinated approach to ME and post-Infectious disease research. A dedicated hub would help unlock scientific breakthroughs, attract long-term investment and ensure that parents, clinicians and researchers are working together to build a future with effective diagnosis
Will you agree to meet with Action for ME to discuss these concerns and explore how the Department can support a more strategic response?
Further Information
- MEA Facebook: Tessa Munt MP, and all 72 Lib Dem MPs, write to express their concerns to Wes Streeting about the DHSC Delivery Plan | May 12, 2025
- The ME Association: New collaborative campaign launched calling for an ME/CFS, Long Covid and Post-Infectious Disease research platform | April 22, 2025
- GOV UK: Policy Paper: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan | July 22, 2025
- The ME Association’s statement on the Government’s Delivery Plan on ME/CFS | July 22, 2025
- The ME Association: David Tuller interviews Dr Charles Shepherd about the new ME/CFS Delivery Plan | July 29, 2025
- The ME Association: Dr Charles Shepherd interviewed on BBC Radio Scotland about the new ME/CFS Delivery Plan | July 29, 2025