The past six months have been incredibly productive in our efforts to support individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and to strengthen the services available to them. We have engaged with key service leads and provided direct support to individuals.

The team has played a vital role in collaborating with healthcare organisations and residents across various regions of the UK, especially those taking part in the pilot program. This collaboration has strengthened our project's credibility and ensured that the voices of all stakeholders are heard and considered.

A key focus has been meeting with service leads across Wales and England who oversee ME/CFS and Long Covid services. Additionally, direct engagement with individuals who have ME/CFS/Long Covid ensures their voices are included.

We have concentrated on raising awareness and advocating for the implementation of the NICE Guidelines, which may involve creating new or improving existing specialist services for ME/CFS and Long Covid clinics. National and local initiatives, driven by our shared goal of enhancing healthcare, will show healthcare commissioners that local communities desire quality healthcare.

We are committed to actively engaging with local representatives, including councillors and Members of Parliament (MPs), as well as existing local support groups, patients, and caregivers. This inclusive approach ensures that all perspectives are heard and considered.

We reached out to all social care teams in the pilot region; while all teams responded, they highlighted a significant issue: ME/CFS diagnoses are not formally recorded because social care assessments are based on needs rather than specific conditions. This means we cannot accurately record the number of individuals within the community who have ME/CFS/Long Covid and require home care.

In light of recent announcements about the closure of NHSE and a mandate for all Integrated Care Boards (ICBs) to reduce their operating costs by 50%, we have contacted the engaged ICBs to determine whether this has affected their service provision. Updates will be provided based on their responses.

We aim to build upon the insights and experiences gathered during the pilot program, applying these lessons to enhance our strategies and expand our outreach, ultimately affecting a larger population while increasing awareness of our mission.

To support our efforts, we will initiate or strengthen educational training programs for healthcare providers, ensuring they have the most relevant knowledge and skills.

Some of the services we have worked with so far include:

• ICBs
• NHS Trusts (including Mental Health and Community care)
• Commissioners
• Local authorities (responsible for Adult and Children’s social services)
• District councils
• All Healthwatch’s
• Primary Care networks
• NICE
• GP Practices
• ME/CFS and Long Covid clinics
• People with ME/CFS/LC and carers/family
• MPs
• Support groups
• Social Care HCPs
• Other Charities

We distributed a new leaflet to all Councillors and MPs. This leaflet was created in response to a request for a physical handout that they could provide to individuals inquiring about ME/CFS and Long COVID services or wishing to join our working group.