Children and young people’s ME/ Chronic Fatigue Syndrome

The Paediatric ME/Chronic Fatigue Syndrome (CFS) service cover Hertfordshire and Bedfordshire areas and work closely with GPs, the education services and school nurses.

The aim of the children and young people’s ME/CFS service is to enable the patient and family to manage life with ME/CFS, work towards recovery in the best way possible and utilise any local or national resources which will help them do this.

The team consists of the Lead Consultant Psychologist, Clinical nurse specialist, linked Paediatrician and linked specialist physiotherapist, we work closely with GPs, the education services and school nurses and will also involve other agencies eg Child and Adolescent Mental Health Services (CAMHS) and children’s services if necessary.

The child or young person will be referred from your GP to a paediatric consultant to confirm diagnosis. The consultant will then refer on to the team, following on from an assessment and excluding blood tests as per the NICE guidelines Oct 2021.

Pathway

The initial appointment will be arranged following on from a referral by consultant paediatrician or GP.

The patient will need to have some exclusion blood tests (as requested by the NICE guidelines below). This will also include an assessment of symptoms and how they impact on day to day life. The patient will then have a “talking” appointment with both the clinical psychologist and the specialist nurse.

Each child will have an individualised care and support plan including:

• Baseline of activity identified – including physical, cognitive and emotional factors
• Impact on education; may require a part-time timetable and support from education Support Team for Medical Absence
• Impact on physical activity discussed – activity plan agreed (possible referral to Physiotherapy with joint clinic appointments at Danestrete Health Centre in Stevenage)
• Strategies identified to manage feelings, with one to one sessions with consultant psychologist if required
• Quantity and quality of sleep explored
• Advice and guidance on diet     

Follow up – Four to six weeks for regular reviews indicated by patient need. Regular liaison with individual schools, possible attendance at school and multidisciplinary team meetings if required.

Useful links:

• Sandbox Hertfordshire
• NICE guidelines for Myalgic Encephalomyelitis (or encephalopathy)/Chronic Fatigue Syndrome (ME/CFS)
• Young persons guide to ME/CFS
• Action for ME help for young people
• How you feel matters (guidance from Central Bedfordshire)
• Mental health support guidance for professionals working with children and young people