Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Nov 24, 2018.
Open access at https://www.frontiersin.org/articles/10.3389/fped.2018.00330/full
by Paul Whitely
The development of a short form of the DePaul Symptom Questionnaire
2019 Jul 18
It's hard to tell from this abstract whether it includes any new information from what was in the 2018 paper at the top of this thread. That had a section about the SF DSQ and a link to the questions included in it.
The full paper isn't on sci-hub yet.
The DSQ-SF is freely available at REDCap's (34) shared library: https://redcap.is.depaul.edu/surveys/?s=HCT7J8EWPC
Seems to me still far from ideal. I like however that it's really short and simple.
It covers many symptoms, though I feel it doesn't quite capture PEM for me. It needs to be able to capture things like delayed effects, prolonged recovery, etc.
Flu-like stuff is covered but sensory symptoms are reduced solely to chemical sensitivity and food intolerance, which I don't think quite gets to the heart of the matter.
I understand it has to be brief but next-day soreness and tiredness after minimal exercise don't seem specific enough to me when other things are left out. They could just be signs of being unfit or overdoing it.
Soreness really doesn't work here. It's the right term for normal exercise reaction, this is different and it creates confusion with the deconditioning trope. "Next-day increase in symptoms" is probably closer to it. It's definitely lacking in sensory stimuli. Noise sensitivity is not the most disabling by itself but it severely limits normal activities because holy crap is the world LOUD all the damn time. Everywhere there's noise and more noise stacked on layers of constant noise.
Headaches should probably be a category of their own. Technically part of flu-like symptoms but it can have its own severity and it turns out headaches can have their own headache, anyway definitely more similar to the kinds of headache that come with the flu, rather than typical ones.
Not perfect. Still 10x better than any other questionnaire so far and 100x more than some of those commonly used in practice like the useless CFQ. I like the frequency-severity approach, this is the right way to do it.
It's definitely the best we've got. I wonder if we patients could tweak it ourselves and then ask researchers to test what emerges?
My main concern is that they've left the effect of pacing out of the equation. Those not pushing themselves will report lower frequency and severity of symptoms which won't reflect how reduced their function really is. Whereas those pushing through will report feeling more awful more often even if they're actually less severe.
The questionnaire would possibly work very well as a way to track how successfully people are pacing. But for diagnostic purposes it needs some questions along the lines of "if you went for a half hour walk today, would you get a significant increase in symptoms tomorrow or the day after?", and repeating the same question with a few different types and levels of activity.
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