Over the past year, the Healthcare Team has led a significant programme of work to improve understanding, access to care, and the quality of care for people living with ME/CFS and Long Covid. This annual report captures the outcomes of a 12-month pilot project that evaluated current health and social care provision, identified gaps, and worked collaboratively with services to influence meaningful change. Covering a large population, the project has brought together patients, clinicians, commissioners, and partner organisations to improve care pathways and advocate for evidence-based practice.
Throughout the year, the team engaged extensively with NHS services in primary and secondary care, within and outside the pilot region. Key priorities included promoting adherence to NICE guidelines, improving access to specialist services and ensuring that the voices of people with lived experience were central to service design. The findings highlighted persistent challenges, including long waiting times, inconsistent access to care, limited provision for people with severe and very severe ME, and ongoing use of outdated or inappropriate treatment approaches. Despite these challenges, the project achieved tangible progress, including influencing service specifications, supporting the removal of harmful practices, and contributing to improvements in referral pathways and clinical guidance.
A core strength of the work has been its strong emphasis on collaboration and advocacy. The team supported individuals and families through the ME Reach email service, worked directly with clinicians and commissioners to resolve systemic issues and played a key role in national and regional discussions about service development. Training and education were central to this effort, with targeted work to improve understanding of ME/CFS among healthcare professionals and to promote consistent, compassionate and evidence-based care.
As the project moves into its next phase, the focus will be on consolidating progress, expanding education and training and supporting the development of sustainable, equitable services across the UK.