Do diagnostic criteria for ME matter to patient experience with services and interventions?, 2023, Kielland et al

[Kalliope]

That said, the authors of the study have been accused of rigging the results due to selection bias, even if it is not done here.

True. Even though researcher Kielland painstakingly has explained how and why their method is trustworthy.

 

[Nightsong]

Wyller et al have published a critique of the generalisability of this paper:

"ME patient experiences: Sampling bias limits the external validity of findings" (J Health Psychol, 2025).

https://journals.sagepub.com/doi/pdf/10.1177/13591053241310320

Abstract:
In a recent paper in Journal of Health Psychology, Kielland et al. present a study with the first objective of docu- menting how helpful or unhelpful persons with ME perceive common services and interventions. The authors recruited participants by respondent driven sampling, a method that aims to produce estimates that correct for sampling bias. However, we argue that the main assumptions of the method are not met, and that the results of the study thus cannot be generalised to the intended target population.

...

Taken together, we caution that the study design limits inference regarding the utility of interventions, and the sampling method restricts generalisability to groups other than ME-association members and affiliated non-members. This is not to say that the group studied is insubstantial or that findings from this group should be ignored, but that when using patient experiences to guide health policy, it is paramount to ensure appropriate representation from all of the target population.

 

[Midnattsol]

Looking forward to how Wyller et al's work will include more representative patient populations going forward than what they have in the past

Edit to add: Remember Wyller is amongst the researchers who have argued diagnostic criteria don't matter.

 

[ME/CFS Skeptic]

His main arguments seem to be that recruitment was biased towards ME Association members or people affiliated with it and that it did not include patients who have recovered.

But even if this was only a subgroup who had bad experiences with current services, it would be cause of concern (e.g. to investigate this further) but Wyller doesn't mention or show any interest in this in his response which I found rather disappointing.

 

[Midnattsol]

I am curious as to why the reference for other patients supporting a biopsychosocial view is the Norwegian Government's report on Women's health.

It's not weird since one of the subsections on ME is one on Lightning Process written in positive words (one of the authors of the report is Kennair, the supervisor and PI of Live Landmarks Lightning Process PhD), but the report doesn't say anything that refering to Recovery Norway wouldn't have (something that has been done in the past for the same argument).

 

[rvallee]

"For my friends, everything; for my enemies, the law"