On 21st July 2025, the Health and Social Care (HASC) team met with a regional commissioner for respiratory and diabetes services to discuss progress on integrating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long Covid (LC) services. The HASC team presented an overview of our pilot project and ongoing patient engagement work, including insights from our pilot ICB survey, which has now closed after gathering over 50 responses — an encouraging level of participation given the challenges faced by this patient group.
Key discussion points included early findings from our working group, highlighting a strong patient and carer preference for a physician-led service, early advice on pacing (aligned with NICE NG206), and improved GP education. The need to support accurate coding of ME/CFS and LC across services was also raised.
We have received assurance that patient and carer insights will influence service delivery going forward. The commissioner also welcomed continued collaboration with the HASC team to ensure patient perspectives inform service planning and monitoring.
We would like to take this opportunity to thank every person who has devoted their time and energy to this engagement work. We are now working hard to disseminate these findings in the coming month and magnify the voice of service users in shaping the support they receive.