Thanks for trying to tackle this very difficult task
@trudeschei. I've been thinking about how to improve questionnaires for some time and it's not easy! Discussions spread over various threads here on S4ME show the same. In fact it's devilishly difficult to get this right.
Existing questionnaires have mostly been developed either for other conditions or are based on questionnaires for other conditions with only minor alterations. This leads to two key problems that I don't think can be solved with tinkering but which need some fundamental rethinking.
1) The example situations in existing questionnaires are often not relevant for ME. On this point the Norwegian draft is a welcome improvement. However, in some sections there were still big 'jumps' in functionality. One example I recall was distance walked, short distance up to 100m or longer distance above 100m (or something in that ball park, going by leaky memory). There's a big difference in function between being able to walk a few metres between rooms in the house and being able to cover 100m in one go which, with suitable planning and parking availability, may actually get you out of the house.
The problem with trying to cover all the levels of severity adequately is that this would make for a
very long questionnaire. So I'm beginning to think we should have separate questionnaires for different levels of severity. It really makes no sense to ask the same questions of people who can still manage some employment as of people who are bedbound. One could start with a few questions for everyone to establish approximate severity (use the time-feet-on-the-ground concept?) and then, depending on those answers, direct people to fill in the section most appropriate for them.
2) Existing questionnaires don't account for the effects of PEM and pacing. This can lead to highly misleading results. The Norwegian draft attempts to address this with a couple of questions at the end asking about the nature of fluctuations and if the week asked about was typical, better or worse. I don't think this approach of separate questions is enough though. Yes, an ME-informed doctor may be able to use them to better interpret the answers to the other questions but the likes of welfare assessors would not know what to do with them. And in research, typically, questionnaires are just an exercise in counting ticks. So I think we need to rethink ME questionnaires from the ground up.
Below are some notes (with more questions than answers) I've been working on for some time - and they're very much a work in (slow) progress - but they may help start some useful discussions, so posting as is:
Things to keep in mind when asking about symptoms or function in pwME (as a replacement for function or disability scales; scales supposedly assessing mental health need to be addressed separately).
PEM, Pacing, the ability to do things once but not repeatedly, and general variability are major confounding factors and generally not understood by people outside the ME community (e.g. support service assessors). They are rarely considered in existing questionnaires making results difficult and ambiguous to interpret.
Be clear about the purpose of the questionnaire. Is it intended to track disease progress over time? Is it intended to show the differences between PEM and baseline function? Is it intended to give support service assessors an accurate picture of what a person can consistently do without worsening? Other? This partly determines to what degree questions need to be asked about how frequent something was actually done within what period of time and what is more generally doable at the current level of severity.
Is the questionnaire to be scored and if so how?
If asking about a specific time period (e.g. last week or last x month/s), establish
first if the person was affected by PEM during this period, and to what degree they were able to pace. Without this information interpreting their answers about symptom load and function is meaningless.
If asking how many times a pwME did a certain activity in a given period, establish if the answer was by choice, by necessity, or due to irrelevance. PwME may choose to restrict a certain activity as part of their pacing. Or they couldn't do it that week because of PEM. Or they may be entirely unable to undertake the activity. Or they may have had no need to undertake the activity.
If asking about the frequency and severity of symptom or PEM similar considerations apply as answers may vary significantly with and without pacing. If not careful, answers will measure the ability of the pwME to pace effectively instead of the severity of their ME.
If asking about the frequency/severity of effects of sensory overload answers need to reflect the possibility that the pwME wasn't exposed to certain sensory triggers during the period whether by choice or good fortune, e.g. if somebody lives in a very quiet location they may not have had any problems with noise the previous week but that doesn't tell us what level of noise they would be able to tolerate.
Questions often become extra ambiguous because pwME adapt their activities so they can achieve them but not in a way a healthy person could. E.g. a pwME may well be able to prepare a full meal each day (tick yes?) - but only if they choose simple recipes, spread preparation out over the whole day, and drop other tasks to make room in their energy budget (tick no?).
Possible questioning strategy (needs work, go detailed first to ensure nothing is missed then pare back to most important to reduce number of questions):
Are you able to take a daily shower without incurring PEM and without making adaptations to achieve it (e.g. drop other essential activities of daily living that day, use a shower stool, use a bathrobe instead of towelling yourself dry, etc.)?
Are you able to take a daily shower without incurring PEM provided you make adaptations to achieve it?
Are you able to take a shower once every few days without incurring PEM provided you make adaptations to achieve it?
Are you unable to take a shower without incurring PEM even if you make adaptations to achieve it, but still shower on rare occasions and pay the price?
Are you unable to take a shower at all (e.g. because you're bedbound)?
