ME/CFS - course of illness survey, 2022, Norwegian ME Association, open to all

Post copied from the News from Scandinavia thread

Survey by the Norwegian ME Association.
From OMF email:
This survey is in English and is open for anyone with ME/CFS to participate.
Caregivers may answer on behalf of patients who are too ill to complete the survey themselves.
The survey consists of two sections, approximately 10 minutes each. You may pause at any time while filling in the questions and return later. Answers are not final until you submit the survey.
As the Norwegian ME Association has shared, “We hope that as many as possible take time to answer! We know answering surveys requires a lot of effort, and we greatly appreciate that patients and carers spend valuable time and energy answering.”

https://www.surveymonkey.com/r/courseofillness22

 

It's quite a good questionnaire, although for a lot of them I found myself thinking 'it depends'.

(there are quite a few typos on question 14)

I don't think it really gets to the bottom of the issue of delayed PEM though and that it is possibly cumulative.
Also its difficult to get accross the impact the illness has on your daily life when what you can and cant do/ for how long etc has become almost instinctive.

 

Agree with both.

The most useful ME questionnaire I've seen yet.

But still with some questions/answer options that I felt were ambiguous or of the 'it depends' type, and I recall thinking some aspects of PEM - possibly the cumulative trigger thing, not sure now - and resulting loss of function weren't fully captured.

Which shows how devilishly difficult it is to design a questionnaire that accurately captures our experience because these guys put a lot of thought and effort into it. It also shows it is possible to do a heck of a lot better than the rubbish we're usually confronted with.

 

No 2021 or 2022 onset option, oddly.

Edit: no 2021 or 2022 diagnosis option either, although it offers 1930 for any centenarians who dimly recall a frock-coated consultant suggesting poliomyelitis or neuromyasthenia.

 

Thank you!

If you have any comments on the function part of the survey, please let me know. It is not cast in stone yet, and we are open to suggestions - and very happy to get them!.

 

Done !

 

I would separate my experiences with others into pre-diagnosis (5.5 years, very little support from anyone) and post-diagnosis.
The period after diagnosis is much more relevant in finding out attitudes towards ME.

Also my course is different based on these two time periods.

 

Your responsiveness to suggestions for improvements is wonderfully refreshing, @trudeschei . It makes a welcome change from the defensiveness we too often meet, even from people who are otherwise allies.

Anyway, it's a while since I filled in the survey. My memory was fading even when I wrote the above post, and it's completely blank now. As @Hutan suggested you could post the list of questions & answer options here for discussion. Or, if a public forum isn't the right place, you're welcome to message me (and I'm sure some others here, too) with a copy. I'd be happy to have another look and provide feedback.

No promises it will be of any use. Pointing to what isn't working well (for any one individual) is the easy bit. It's a whole lot more difficult, nigh on impossible, to figure out an alternative that would capture not only our own experience well but everybody else's, too.

Which isn't news to anyone here, witness the various threads on the forum where we've attempted to come up with improved questions & answer options for various questionnaires, with mixed success to date. Always a work in progress.

 

Comments are always welcome, even though we cannot always accomodate all.

The part of this survey that is about function has been trialled in three rounds in Norwegian Facebook groups, and we have gone through all 800 comments already

We ask about function, and the aim is to find a way to evaluate function levels. The answer alternatives give an idea about cumulative effects of activity - we hope.

And yes, designing good questions is hard! I have designed several questionnaires by now - and I know how hard it is to get everything right Also that no matter how carefully you phrase your questions, someone will not read them as carefully, some will interpret them in a different way than you intended or just plainly misunderstand, and some will think that you should have asked about something different entirely. - It is also completely impossible to cover every eventuality, and open-ended questions seem a good idea, until you have to analyze 7500 of them (I managed 200 per day).

 

this is just from memory, but the problem i found was that you could only select one answer and there was a choice of something like, 'I am more ill the next day' clearly aimed at PEM, but there was also, something about 'it limits what other activities I can do' which is what I tended to pick. So it might imply that I don't get PEM, which I do.

 

We very much thing that "limits what I do the next day" means PEM.

From my own experience - and from other ME-patients' - the amount of PEM Ihave depnds on how far an exertion exeeds my limits - so if I do a lot (like going to a party or other event) I could do nothing the next day, If i do a little less - like going to the shops, it would impact what I would be able to that day, and the next... Both show a degree of PEM.

 

yes, I get that. My point was that some activities (anything involving over-exertion) limit what I can do on the same day. If I attempt to do more it will affect me even more the next day, and limit what I can do still further.

I can only dream of doing either of these (certainly the first is a distant memory).

 

<3
I know that that is the case for so many. I am one of the lucky ones, and have a life that looks normal (ish) when others see me.