Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

[Utsikt]

Not sure if I'm missing something or you misunderstand what I'm trying to articulate. I am attempting to point out a perceived weakness in the design of FUNCAP. Line by line or in isolation, I would have to honestly answer "I must limit other activities on the same day." Yet, with the exception of those who are nearly incapacitated with illness, it's not realistic to assume anyone is able to do as few as one activity per day to avoid triggering PEM.

Yet FUNCAP seems to ask about activities in isolation which is completely meaningless and unrealistic.

FUNCAP doesn’t ask «what would this activity result in in isolation».

It asks you to consider an average day (of activities) the last month, and then to estimate to what extent doing X would affect how much else you could do that day (and the following days).

FUNCAP5 currently gives me a score of

>Mild: Less than a 50% reduction in activity level compared to before the illness.

The paper also acknowledges that FUNCAP has a harder time differentiating between mild and >mild, as well as severe and very severe, and that it isn’t the end all be all of total functional capacity for pwME/CFS.

And I think that doctors should be made aware that trying to go beyond what you currently can manage is going to reduce the effective functional capacity because PEM costs more afterwards than it takes to cause it.