Long Covid and ME/CFS can significantly impact your ability to carry out day‑to‑day activities. This is called a reduction in functional capacity, and it is one of the most debilitating aspects of living with an energy-limiting condition. However, until now, this impact has been difficult to measure, and understand.
We're now combining a breakthrough research questionnaire with an all-new Monthly Check-in to make tracking this much easier.
Tracking symptoms or activity alone is not enough
Functional capacity is defined as an individual's ability to perform tasks and activities that are necessary or desirable in their lives.
However, tracking symptoms alone does not capture this properly. This is because, for many people, as their condition improves, they increase their activity to tolerate a similar level of symptom severity.
This means that when evaluating treatments, beneficial outcomes can easily be missed if only symptoms are being tracked.
Similarly, tracking only your activity levels is not enough either. Many people are able to increase their activity, but this doesn't take into account the cost of doing so.
A different tool is needed to solve this.
FUNCAP27 is a new questionnaire that measures functional capacity
Until now, there hasn't been a good, or validated, way of measuring functional capacity in ME/CFS or Long Covid. A few months ago a research paper was published by four researchers who aimed to track functional capacity in energy-limiting illness. They spent 2 years working with over 1000 patients and going through 5 iterations to create a new assessment tool - called FUNCAP27.
FUNCAP27 is a patient-informed and validated questionnaire that uses 27 questions to measure Functional Capacity.
The questionnaire covers 27 activities across 8 areas and for each activity asks:
- What are the consequences for you if you perform this activity?
- To what extent does this affect how much else you can do?
Completing the questionnaire provides a total score out of 6, where a score of 5.8-6 is typical of a healthy individual and a lower score represents reduced Functional Capacity.
We’re including FUNCAP27 in the new Monthly Check-in.
Since Visible first launched, the Morning Check-in and Evening Check-in have been the primary way to track your health over the long-term. Now we’re adding a third.
The all-new Monthly Check-in allows you to easily track your functional capacity score each month. It helps you to understand where your illness has the biggest impact on your life, and keep track of changes happening over time.
Making the invisible, visible
The monthly check-in is a crucial tool to shine a light on functional capacity. It represents a huge step forward in understanding energy-limiting illness, and support research into new treatments and management strategies. And we’re excited to bring it to more than 50,000 people using the Visible app.
A massive thank you to researchers Kristian Sommerfelt, Trude Schei, Katharine Seton and Simon Carding for their hard work in creating FUNCAP27, and to the many thousands of patients that are part of the The Norwegian ME Association’s community who provided their input and support.
As one of the authors Trude Schei shared with us: 'We really should have had a list of authors several thousand long for this paper. We have received so much valuable input and feedback from so many. As they are all anonymous, all I can do is to say a huge thank you to everyone who has used their limited energy on testing and commenting. The degree of user involvement in this project is unique – and invaluable.’
We hope by combing the results of this important work with the Visible app, we’ll help make functional capacity a gold-standard metric. Not just for patients, but for clinicians and researchers around the world too.
Onwards!
Harry
