The ME Association has launched a digital app and clinical assessment toolkit in collaboration with with ELAROS. 

The MEA Clinical Assessment Toolkit includes a series of questionnaires which detail ME symptoms, post exertional malaise, activity levels, clinical needs and satisfaction with ME/CFS services. 

They are sometimes referred to as Patient Reported Outcome Measures (or PROMs) but they do much more than merely measure outcome.

They produce information to help you and clinicians better understand your difficulties and open up discussions about how to manage them. This then supports other aspects of care such as making a diagnosis or developing a care and support plan.  They can also be used to track changes over time and produce summaries to share with others (e.g. family, other health or social care professionals or employers). 

Professor Sarah Tyson’s work with other long-term disabling conditions has shown that using an assessment toolkit can streamline that assessment process. This improves understanding of patients’ problems, facilitates communication (between patient and professionals, and between professionals) and speeds up decision-making. 

Phase I of our project is complete and Phase II is in progress 

The toolkit is now available to anyone who wishes to use it. It is available digitally via Elaros’ autonom-e app as a publicly available download. It is quicker and easier to complete the toolkit digitally as the scores are calculated automatically, but hard copies to download are also available to maximise access. 

The second phase will: 

• Disseminate findings via peer-reviewed publications.
• Expand the toolkit with three new resources (co-morbidities checklist, care and support plan template, and a version for children and young people).