Summary of ME Questions and Answers – April 2025

This document provides a detailed overview of recent discussions and updates from the UK Parliament regarding long COVID, myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), and related healthcare services and research initiatives. Key points include:

1. Long COVID Clinics: Integrated Care Boards (ICBs) are responsible for service commissioning. An NHS England stocktake revealed challenges in care delivery and data collection. Further discussions on improving services are ongoing.
2. Support in Specific Areas: For regions like Surrey Heath, the development of a comprehensive ME/CFS delivery plan is in progress, expected by June 2025. It focuses on improving research, education, and patient outcomes.
3. Research and Funding: The government emphasizes increasing high-quality research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC). Initiatives like the DecodeME project and other funding programs are highlighted.
4. Potential Centre of Excellence: While the government does not plan to establish a new centre for post-viral conditions, existing infrastructures and funding opportunities are being optimized for research and care improvements.
5. ME/CFS Delivery Plan: Due for publication by June 2025, it will address themes such as boosting research, enhancing attitudes and education, and improving the quality of life for individuals with ME/CFS.
6. Guidelines and Clinical Support: Updated NICE guidelines inform the management of ME/CFS and long COVID. ICBs are responsible for service provision, with support for health professionals to manage these conditions effectively.
7. Medical Cannabis for Chronic Conditions: Current recommendations do not support the use of cannabis-based medicines for conditions like Charcot-Marie-Tooth Syndrome or ME/CFS, highlighting the need for further research.

This document underscores the UK’s ongoing efforts to address the needs of patients with ME/CFS and long COVID through improved service delivery, research investment, and strategic planning.