Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) Service
Ways to get involved with the Leeds and West Yorkshire Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME or CFS) Service:
Your care and moving on plans
What’s involved? Create a care plan that reflects your needs, strengths, and goals. You can do this at anytime and your allocated working will encourage you to think about this. You can ask for a copy of your plan and discuss any changes you want to make.
Groups and forums
We hold a bi-monthly patient forum where we discuss service development plans and ideas. Anybody who has had a period of care with us can be involved and directly shape the future of the service. If you would like to be involved, please speak with your allocated clinician or contact us via phone (0113 85 56337) or email the ME/CFS Service.
Help us recruit new staff
We are always looking to ensure our team reflects the needs of the people we support. You can help us select and interview new staff members, bringing your lived experience to the process. Your input is valuable in shaping a team that understands and meets the needs of people living with ME/CFS. If you would like to be involved, please speak with your allocated clinician or contact us via phone (0113 85 56337) or email the ME/CFS Service.
Support and useful links
- Action for ME provide helpful booklets on the condition, pacing, employment and welfare rights, includes section for children/young people
- ME Association links to local groups and telephone line for information and support
- British Association for ME AND CFS professionals (BACME) – NHS services map, symptom and therapy guide, and shared practice document on severe ME/CFS
- Autonomic dysfunction – an American site providing information and advice for managing autonomic dysfunction
- POTS UK is a UK site specifically about Postural Orthostatic Tachycardia Syndrome with a section for medics as well as patients and families
- Hypermobility syndromes – information for patients and professionals
- British Dietetic Association provides basic dietary advice on a wide range of subjects including a food fact leaflet for CFS and various food intolerances/allergies
- Research conference videos available from the Action for ME YouTube channel
- Fighting Fatigue: a practical guide to managing the symptoms of ME/CFS (Pemberton and Berry 2009)
- Anxiety UK
- Mental Health Foundation
- Mental health helplines
- Get self help support
- Mind – online support groups and general information about mental health
- Mindwell Leeds
- Samaritans offer emotional support 24 hours a day
- Rethink Mental illness
- Shout – for people experiencing a crisis, experiencing suicidal thoughts, or have thoughts of self-harm. Text Shout on 58258.
Page last updated: 5th Mar 2026 2:25pm