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FUNCAP

FUNCAP is a questionnaire that has been developed to assess functional capacity in patients with diseases where post exertional malaise (PEM) is present. PEM is also known as post exertional symptom exacerbation (PESE) or post exertional neuroimmune exhaustion (PENE).

PEM

The most easily identifiable and mandatory feature of PEM is that activity exceeding an individual’s motor, cognitive or social tolerance levels results in a prolonged increase in symptoms, and reduced functional capacity. The onset of PEM is often delayed by up to a day or more, and can last for days, weeks, or longer, depending on the level and duration of the increased activity. Not only a single activity, but the sum of activities, can trigger the onset of PEM and increase its duration.

A novel way to ask

To assess functional capacity in patients with PEM, we need to know the consequences of performing activities, and not if a patient “can” simply do something. In this context “can” may mean both “Can, but collapses afterwards”, or “can without problems”. FUNCAP does not ask whether the patient “can” do an activity, or how often but asks how performing an activity affects the ability to perform other activities.

Developed with the help of patients

FUNCAP was developed through several consecutive rounds of surveys and feedback from thousands of ME/CFS respondents. It has been designed to be used for assessing PEM and functional capacity when investigating possible ME/CFS diagnosis, follow-up, assessment in connection with applying for disability benefits, and in research as outcome measure. The form comes in two versions, a longer with 55 questions, and a shorter with 27 questions.

FUNCAP is distributed under a Creative Commons Attribution (CC BY) license, and can be used free of charge.

FUNCAP languages

So far, FUNCAP is available in Norwegian and English, but we welcome translation efforts. It is, however, important that translations are done using approved methods. Read more here.