Questionnaires - design, validation and use in ME/CFS research - discussion thread

Worse than that, it has now been at least a few decades since scientific psychology realised that all the 'intelligence' stuff using things like IQ tests was not only racist but useless due to it measuring cultural issues and areas that white natives at good advantage would have drilled into them instead of actual tests of intelligence in some of them.

Those lessons really take no transferrable skills and the lessons themselves are pretty parallel and so similar they prety much slide across and direcly map-over to being able how you not only word your questions but being really poor at designing your questions vs your actual research question: in layman's terms 'missing the point' and 'measuring something completely different to what you claim/think you are'.

The fact that certain demographics might be the ones that smart most at the weird wording that doesn't make sense from some of the irrelevant questions on your survey doesn't indiciate pathology in them but is almost the equivalent of when in psychology you do the test where words are missed out and those who are most used to reading sentences like that don't even notice they are missing when they scan-read, but those who tend not to read stuff like that 'spot the error'.

I have real issues with people using wording and not having to test the semantics and meaning imbued from these and them making sense and being interpreted to actually asking what they claim they do: that is the first thing anyone doing any kind of market research or survey, no matter how informal, has to do (even if it is 'read this question, what does it say to you, does it make sense etc' to a few colleagues) - and yet for some reason the subject area doesn't have as standard a section where they have to include this testing of these tools in their methods section or at least appendix.

 

Just stumbled across Arthur Stone, researcher on 'Self-report of medical and psychological outcomes' when searching for more of Eccleston's and Amanda Williams' work.

Sorry currently unable to skim his papers but thought could be relevant for those of us working on the issue.

A. Stone's research seems to address problems with mostly pain but also fatigue scales , e.g. recall at different time points and patients' compliance with filling in paper / online diaries

Apologies for just leaving a link to his publication list here for now:

https://renaissance.stonybrookmedicine.edu/psychiatry/faculty/stone_a

 

Professor Kristian Sommerfelt talks about the Norwegian Functional Capacity questionnaire development at the IIMEC15 Conference & explains how they tested and validated it. Sounded more rigorous than some others we've read about

https://www.youtube.com/watch?v=9o9KLSvHV8E

More discussion here

 

Nice. Have just skimmed to get the general idea, but this looks a lot like what I proposed a while ago. Actually looking for it, 4 years. Ugh. Time passes, and life with it. From a thread about a similar scale called the Validation of the Pittsburgh Fatigability Scale.

This is something that comes up so often on social media, it's good that some experts are finally paying to it: it's not what you can do, it's what you can do without consequence, and can maintain. Don't even need to grow, to do more, merely what is sustainable without incurring penalty, without tradeoffs.

And there were a few similar comments today from the thread about a center in Norway for severe ME patients, that too often what simply happens is substitution of activity, which is what mostly happens in BPS program. They boast about patients being able to do more, but don't notice, or don't care, that it was in exchange for other things, or that it's an artificial increase if it's in an in-patient treatment where patients don't have to do chores that have to be done in normal life.