The new app, which has been developed by experts in the field of CFS/ME including Dr Esther Crawley from the University of Bristol, and tested by people with the condition, is designed to assist patients in keeping track of their activity levels, a key part of rehabilitation and self-managing this chronic condition.
CFS/ME affects approximately four in every 1,000 people in the UK. The condition is common in children affecting at least 1 per cent of teenagers, and is arguably the most common cause of long-term absence from school.
Dr Crawley, Consultant Senior Lecturer at the University’s School of Social and Community Medicine and consultant paediatrician and service lead for the children and young peoples CFS/ME service at the RNHRD explains: “Patients with CFS/ME suffer from chronic exhaustion that is not helped by sleep or rest. This affects all aspects of their lives, and on a bad day, even tasks that you or I might take for granted such as brushing our hair or watching TV can be extremely difficult. The flip side of this is that on a good day a person will do too much and then pay for it for the next few days. We call this ‘boom and bust’ energy cycles.
“Energy is anything that stimulates the brain or body. The evidence-based treatment that we use at the RNHRD involves patients monitoring their energy usage on day-to-day activities so that we can see when these cycles occur, prevent them from happening in the future, and help the patient to maintain balance and improve their condition.”
ActiveME© takes this premise and provides an innovative, interactive patient-centred tool designed to help patients monitor and track their activity and energy levels, show energy patterns and help to plan activities on an hourly basis. This data can then be recorded within the application and provide the person with a visual representation of their information.
Louise Wilson, programme manager for the Northern CFS Clinical Network added: “The app is a fantastic way for people to feel in control in managing their condition. Having the app on their iPhone makes their charts and monitoring information more portable and accessible which we hope will encourage more meticulous use of this self-monitoring tool.”
Dr Crawley adds: “The information recorded can then be discussed with their clinical teams and the data used to inform treatment plans. This makes each patients treatment highly individualised and patients can really feel that they are taking charge of their care.
“This is a really exciting development and provides us with another tool to help people with this complex condition to maximise their independence.”
The Royal National Hospital for Rheumatic Diseases (RNHRD) NHS Foundation Trust, the Northern CFS/ME Clinical Network and Indigo Mulitimedia teamed up to utilise modern technology as a tool to help these patients, who often find themselves in ‘boom and bust’ energy cycles. The application is available to download from the Apple App store under utilities.