ahimsaNov 13, 2023

From ME Research UK:

"Can a brief screening scale accurately detect ME/CFS?"

A discussion about the DePaul symptom Questionnaire (DSQ) and whether it is a useful screening tool.

https://www.meresearch.org.uk/can-a-brief-screening-scale-accurately-detect-me-cfs/

#MEcfs #PwME #Research #Diagnosis #MEResearchUK

Show threadVereeshNov 14, 2023
@ahimsa_pdx
I haven't seen the new instrument, and I'm only one patient, so my opinion is probably of no statistical value. Still, I've filled out many of these, and every single one of them has seemed to be written by people with little to no grasp of my illness, with questions that feel tangential at best to what I would consider relevant. Which is not, I think, a condemnation of people who are genuinely trying to help. Just that this is a very difficult illness to describe.
Show threadahimsa

@temporal_spider
I know very little about this questionnaire but there's some discussion of it on the Science for ME forum:

https://www.s4me.info/threads/developing-and-validating-a-brief-screening-scale-for-me-cfs-2023-jason-et-al.35186

ME/CFS can be difficult to describe. The CDC diagnostic criteria (I believe it's a version of what was in the 2015 IOM report) does a pretty good job for my case:

https://www.cdc.gov/me-cfs/pdfs/interagency/What-are-MECFS-Symptoms_508.pdf

I think PEM, aka PESE, is one of the most difficult parts to understand. Many doctors think "deconditioning" even though research has disproved that.

Developing and validating a brief screening scale for ME/CFS, 2023, Jason et al

Objective: The purpose of the current study was to develop and evaluate a brief screening instrument for ME/CFS. The current study identified 4 symptom...

Science for ME
Nov 14, 2023 at 12:34amWeb
Show threadVereeshNov 14, 2023
@ahimsa_pdx
I agree with you. The pdf you have linked speaks to my experience as well, and heavens yes, PEM/PENE is a real bugger. I consider it the defining symptom of the lot. All the other baddies can occur with practically any illness, but the post-exertional crap is unique, as far as I know. It is what makes the disability. Without it, you could exercise your way to greater functionality. With it, you're fucked.