Tools

FUNCAP functional capacity questionnaire

FUNCAP27: a patient-informed measure of what activity costs you

FUNCAP is a functional capacity questionnaire built for ME/CFS. It was created by researchers working with the Norwegian ME Association, shaped by feedback from thousands of patients, and validated in more than 2,600 people with ME/CFS. It was published open access in 2024.

Most questionnaires ask how bad your symptoms feel. FUNCAP asks what activities cost you. If you shower, hold a conversation, or go to a shop, how much does that limit what else you can do that day and in the days after? This captures the "payback" pattern of ME/CFS that ordinary disability scales miss. It also works at every severity level, including for people who are housebound or bedbound.

This is the short FUNCAP27 version: 27 activities in eight groups, each scored 0 to 6 for an average day over the past month. It takes 5 to 10 minutes. You get an overall score, a profile by activity group, and a list of your most costly activities. Your answers stay on your device. No sign-up is needed.

For a quick single-number check you can repeat often, use the Bell CFIDS Disability Scale. For ME/CFS symptom screening, use the DSQ-Brief or the full DSQ-2. If your illness followed COVID-19, the Post-COVID-19 Functional Status scale is a quicker, simpler grading.

This is not a diagnostic tool. FUNCAP measures functional capacity; it does not diagnose ME/CFS or any other condition. Discuss your results with your doctor or specialist. Based on: Sommerfelt K, Schei T, Seton KA, Carding SR. Assessing Functional Capacity in ME/CFS: A Patient-Informed Questionnaire. J Clin Med. 2024;13(12):3486 (CC BY 4.0). See funcap.no for the authors' resources.

Base your answers on an average day during the last month, not the worst nor the best. If you have not done an activity (for example showering standing up, because you always shower seated), score how you think it would have affected you. Each item includes whatever is needed to do it: "going to a shop for groceries" includes getting dressed and travelling. It can help to answer with someone who sees you day to day.

What are the consequences for you if you perform the activities below?

  1. 0 I cannot do this
  2. 1 My capacity will be severely reduced for at least three days
  3. 2 I can do little else on the same day and for one to two days afterwards
  4. 3 I can do little else on the same day
  5. 4 I must limit other activities on the same day
  6. 5 This rarely affects other activities
  7. 6 Unproblematic – does not affect other activities

A Personal hygiene / basic functions

Using the toilet (not bedpan or bedside commode)

Showering standing up

Getting dressed in regular clothes

B Walking – moving around

Walking a short distance indoors, from one room to another

Walking between approx. 100 m and 1 km on level ground (length of 1 to 10 football fields)

Physical activity with increased heart rate, for approx. 15 min

C Being upright

Sitting in bed for approx. ½ hour

Sitting in an upright chair (dining chair) with feet on floor for approx. 2 hours

Standing up for approx. 5 minutes, e.g. while queuing or while cooking

D Activities in the home

Heavier housework (washing floors, vacuuming etc.) for approx. ½ hour continuously

Cooking a complicated meal from scratch, approx. 1 hour of preparation

E Communication

Having a conversation for approx. 5 minutes

Participating in a conversation with three people for approx. ½ hour

Participating in a dinner party, party or family event

F Activities outside your home

Stepping right outside your home

Going to a shop for groceries

Using public transport (bus or train)

Participating in organized leisure activities such as classes, sports etc.

G Reactions to light and sound

Staying in a room with normal lighting, without sunglasses, for approx. 1 hour

Staying outdoors in daylight without sunglasses for approx. 2 hours

Staying in a noisy environment (shopping mall, café or open plan office) for approx. 1 hour

H Concentration

Reading a short text, such as a mobile phone text message

Reading and understanding a non-fiction text, such as an official document one A4 page long

Using social media to stay in touch with others

Focusing on a task for approx. 10 minutes continuously

Focusing on a task for approx. 2 hours continuously

Managing a full working day (non-physical work such as office work, classes or lectures)

Understanding your FUNCAP score

What the score measures

FUNCAP measures functional capacity in ME/CFS: what everyday activities cost you, rather than how bad your symptoms are. Each of 27 activities, in eight groups, is scored from 0 (I cannot do this) to 6 (does not affect other activities) for a typical day over the past month. Each group score is the mean of its activities, and the total is the mean of the eight group scores.

It was developed in Norway with the Norwegian ME Association, through six rounds of surveys in which people with ME/CFS reworked the questions and the answer scale (Sommerfelt et al. 2024). The longer FUNCAP55 is meant for diagnosis and disability assessment; this short FUNCAP27 is for follow-up and research.

Score bands

There are no official cut-offs. In the validation study, the average FUNCAP27 total was 3.3 among 1,263 people with ME/CFS and 5.8 among 178 healthy controls. Average scores were lower at each step of ME/CFS severity, from mild to very severe.

Average FUNCAP27 scores in the validation study
DomainME/CFSHealthy controls
Personal hygiene and basic functions4.56.0
Walking and moving around3.15.9
Being upright4.15.9
Activities in the home2.25.7
Communication3.35.8
Activities outside the home2.75.8
Reactions to light and sound3.45.8
Concentration3.25.8
Total3.35.8

A total of 3 is close to the ME/CFS average in the validation study. On the answer scale, 3 means an activity leaves you able to do little else that day, so a total around 3 means many everyday activities carry roughly that cost.

What a change in score means

No minimal important change has been published. When 301 people with ME/CFS answered FUNCAP27 twice, two weeks apart, their totals were highly repeatable, so a steady shift across several monthly results is more likely to be real than a one-off difference. Answer for a typical day each time, not a crash or a good patch.

Activities in the home has only two questions, and about 15% of people with ME/CFS scored 0 on it, so it shows little change at the low end.

What it does not measure

No. It records what activities cost you, not why. It does not measure symptoms such as fatigue, pain or unrefreshing sleep, or quality of life, and a total can hide large differences between groups of activities.

The post-exertional malaise questionnaire and the DSQ-2 cover symptoms. The Bell scale gives a quick overall rating for frequent tracking. The post-exertional malaise explainer covers why activity costs build up.

Taking this to your GP or consultant

Bring the total, the date, the eight domain scores and the list of your most costly activities. FUNCAP is new, so most GPs will not know it: describe it as a validated measure of functional capacity in ME/CFS that takes post-exertional malaise into account. Because it was designed with disability assessments in mind, the domain profile is useful evidence for a PIP or work capability assessment, alongside a clinician's report. The authors are building clinical guidance at funcap.no. See also preparing for a GP appointment.

Sources