Use of selection criteria in ME/CFS research

CRG said:
We can't assume that greater specificity of symptomology produces a research cohort that has greater pathophysiological commonality - NICE2021 or IOM2015 may have the same variability as Fukuda1994 or each may have similar levels of variability but expressed via greatly differing characteristics, or variability maybe so chaotic in its spread through the patient population that for research purposes none is more helpful than
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Fukuda is a polythetic criteria requiring any 4 of 8 criteria. According to Luis Nacul at a US meeting in 2014, 163 different combinations of those criteria satisfy Fukuda. And as I noted more briefly above, in a review of 53 Fukuda studies, Jason found that the occurrence of the hallmark symptom of PEM ranged from a low of 25% of patients to a high of 100% of patients across those studies while the unrefreshing sleep ranged from 16-100 percent. Jason also showed that patients with only depression can meet one of those 163 combinations of Fukuda criteria

NICE 2021 and IOM 2015 require both of these symptoms. So while NICE and IOM will undoubtedly still be dealing with the heterogeneity that is intrinsic to the disease, Fukuda is so non-specific as to be, in my opinion, almost worthless as a research selection tool and potentially open to bias in the selection of a cohort.

CRG said:
where trial participants are included on the basis of their historic diagnosis, and where the study population is large enough to provide statistical power based on sub cohorts defined by the criteria, then at least three out of: Fukuda, ICC, CCC, NICE2021 and IOM2015 should be applied.
or
where researchers are themselves assessing participants against criteria and where the study population is large enough to provide statistical power based on sub cohorts defined by the criteria, then at least Fukuda, NICE2021 and IOM2015 should be applied.
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If researchers want to select patients who meet all of Fukuda, IOM2015, and NICE2021 or at least three of Fukuda, ICC, CCC, NICE2021 and IOM2015, that's their decision although I am not sure why they would include Fukuda in that list unless they were trying to compare to their older research where they only used Fukuda.

But, at this point, with what we've learned about ME/CFS, it'd outdated at best and bad science at worst to continue using Fukuda as the only selection criteria when they are intending to study ME/CFS.
 
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