FUNCAP27 - Functional Capacity Questionnaire

Communicating with our doctors

One of the most difficult parts of getting medical care for myalgic encephalomyelitis is the lack of good medical education.  As most of us have experienced, our doctors are ill equipped to treat us.  Far too many doctors still equate ME with “chronic fatigue” and approach treatment by telling us to change our behavior.

I try to explain that ME is a patient group that has fatigue like many other conditions but that fatigue is not my main issue.  I explain that I feel fluish, with a hangover plus like I’ve been hit by a truck.  The severity varies, but that has been my experience since August of 1989.

I also try to explain that “CFS” is a vaguely defined patient group and that ME is a more specific group with immune, neurological, cardiac and other biological abnormalities that are described in the International Consensus Primer (ICP).

I then offer them a copy of the ICP.  If they indicate they thought CFS was the same as ME, I show them the following section on page ii of the Primer.

“Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC.  Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

The ICP is a long document that many doctors do not have time to read, so I’ve learned that I need other effective tools to communicate quickly.  As part of my advocacy over the years, I (with the help of a lot of other community members) have created various tools to better communicate with doctors.

Those tools can be found in the ME-ICC Info Table of Contents.

Pugsley (top) and his sister Wednesday enjoying an afternoon snooze.

FUNCAP added to Table of Contents

This is a new tool to communicate functional capacity that helps capture symptom exacerbation caused by normal activities.

The questionnaire covers the following categories:

• personal hygiene/basic functions

• walking – moving around

• being upright

• activities in the home

• communication

• activities outside your home

• reactions to light and sound

• concentration 

For each item in those categories they ask the following questions:

0: I cannot do this 

1: My capacity will be severely reduced for at least three days 

2: I can do little else on the same day and for one to two days afterwards 

3: I can do little else on the same day 

4: I must limit other activities on the same day 

5: This rarely affects other activities 

6: Unproblematic – does not affect other activities

This questionnaire captures my reality much better than any other questionnaire I have done for a doctor over the last 30+ years.

An English version of the questionnaire can be found HERE.

FUNCAP Background

The FUNCAP project was described at the 15th Invest in ME Research International ME Conference in 2023.  The video, Professor Kristian Sommerfelt presentation at the 15th Invest in ME Research International ME Conference 2023, discusses how the Functional Capacity Questionnaire came about.

Professor Sommerfelt talks about how they tried to move away from “can you” do something and focused on using language asking “what happens if you” do something.

In June 2024 the paper, Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire, was published by Kristian Sommerfelt along with Trude Schei, Katharine A. Seton, and Simon R. Carding.

Access to PDFs and DOCx documents of both the FUNCAP55 and FUNCAP27 is now available via the new FUNCAP website.  The questionnaires are available in English, Norwegian and Swedish.  Hopefully more languages will be added.  The website states:

“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).”

Note:  Post exertional neuroimmune exhaustion is the description used in the International Consensus Criteria (ICC).  My article, PEM is not equal to P.E.N.E., discusses why I think post-exertional neuroimmune exhaustion is not exactly the same as post-exertional malaise.

I agree with the following recommendation from FUNCAP directions:

“It is a good idea to answer the questionnaire together with someone who sees you in everyday life.”

Visible App includes FUNCAP27

Another way to access the FUNCAP27 is through the free version of the “Visible: Pacing for illness” app that I wrote about in my article, Managing ME: Visible App - a useful tool?

The free Visible app has incorporated this FUNCAP questionnaire to be filled out once a month.  I have now done six month’s worth and see that my score is holding steady at about 2.8 on their 0 to 6 scale.

Information about how Visible incorporated the FUNCAP can be found HERE.  They explain the numbering system as:

“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.”

Their article goes on to state:

“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.”

Research using FUNCAP

I think the FUNCAP could be a useful tool to stratify the functionality of subjects in research.  Tracking the patient’s progress using FUNCAP could also show if a treatment gives improvement in one or more areas.  

More Tools to Communicate

The following are some of the other tools in the ME-Info Table of Contents list that may help bridge the communication gap between ME patients and their doctors.

Do I have ME? - Webform from the Swiss Society for ME & CFS which provides a printout indicating whether a patient fits the typical or atypical diagnosis of the ME-ICC.

• English 

• German 

• French 

Do I fit the ICC? - ICC Questionnaire for patients over 18 from MEadvocacy.org.  This is a printable handout that uses the same ICC as the webform from the Swiss Society for ME & CFS.

• English 

• Spanish 

• Dutch 

  (In case you have trouble with these links, try going from MEadvocacy’s resource page HERE.)

What symptoms do I have?

• Symptom Checklist (ME International) 

Moving forward

I, too, am grateful to researchers Kristian Sommerfelt, Trude Schei, Katharine Seton and Simon Carding for creating the FUNCAP questionnaire.  I think this tool should bring more clarity to the medical professionals we see.

Until next time,

Colleen

Information provided here or in comments is not to be considered medical advice