I downloaded the Living With app on my phone but it wouldn't let me access it as you have to have a code from your NHS clinician. So we can't see what's on the app about ME/CFS.
Here's what it says on the website:
ME/CFS Therapies A Digital Health Solution for ME/CFS Management Living With ME/CFS is an innovative digital health solution designed to support clinicians and patients in the management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). An estimated 250,000 people in the UK are...
livingwith.health
Living With ME/CFS is an innovative digital health solution designed to support clinicians and patients in the management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
An estimated
250,000 people in the UK are affected by this debilitating condition. Without known causes, clinical tests or cures for ME/CFS, personalised care is critical for improving quality of life, which can be supported through digital platforms.
However, ME/CFS Services face severe underfunding, long waiting lists and many patients stuck in long treatment cycles. Service providers actively seek digital interventions that reduce costs, ease clinician workload and optimise ME/CFS patient outcomes.
A Digital Platform To Reduce Costs & Waiting Lists
Living With ME/CFS is co-designed
with ME/CFS service leads at East Coast Community Healthcare CIC, East Suffolk North Essex NHS Foundation Trust, Hampshire and Isle of Wight Healthcare NHS FT, and several other healthcare providers for:
- Reducing waiting lists through referral to remote care and self-management.
- Reducing cost of caseload management by increasing throughput and joining up care across services.
- Reducing clinician time per patient through reduced follow-up and re-referral.
- Improving patient quality of life through structured advice, symptom tracking and digital support.
The patient app is a
virtual companion enabling patients to manage their condition with fewer appointments without sacrificing clinical effectiveness.
- Validated Outcome Measures: Track physical and mental well-being through your choice of EQ5D, GAD, Nijmegen, WSAS, and PDQ5 assessments, as well as the options for fatigue PROMs
- Personalised Care Plans: Setting, monitoring and achieving treatment goals.
- Activity Energy Diary: A fatigue-friendly, color-coded diary helping patients log their daily activities and track energy expenditures, revealing behaviour patterns for sleep, rest and activity intensity.
- Structured Thought Diary: a guided CBT-style tool for patients to record symptom triggers and responses.
- Secured Two-Way Messaging enabling clinicians to provide remote advice and (optionally) patients to contact the clinic.
- Bite-sized Educational Content on pacing, energy conservation, and coping strategies to support symptom management and behaviour change.
The Living With platform saves clinicians time and reduces administrative workload, through:
- Real-Time Data Collection: Clinicians can spend less time collecting information and more time on clinical decision-making.
- Task-Based Interventions: Clinicians can prescribe specific self-management modules (e.g., “Complete a fatigue diary,” “Read about pacing”) to support treatment between appointments.
- Archived Plan Access: Both clinicians and patients can review past interventions and progress, making more informed adjustments to treatment.
- Patient-Initiated Follow-Up (PIFU) Support: Provide post-treatment recovery plans and keep patients ‘connected’ post-discharge, ensuring they receive necessary follow-ups without burdening clinical teams; reduce re-referral and ED admissions.
- Patient Groups: Innovatively allowing clinicians to send nudges to particular cohorts, or manage group-based therapies more efficiently.
Next Steps
If you are a
commissioner,
NHS Trust or
healthcare provider we invite you to explore how
Living With ME/CFS can enhance your ME/CFS service provision.
Contact us today to discuss partnerships, pilot opportunities, and commercial models.
transform.england.nhs.uk
www.esneft.nhs.uk