Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

The patients' responses are thoughtful, and if the researchers took them properly into consideration, they would learn something. However, it doesn't look at the CFQ's usefulness overall in evaluating fatigue and distinguishing fatigue from depression/anxiety. Also, no recognition of the need to evaluate PEM.

It's not ethical to sit on this for so long, when the researchers have concluded revision is required. Thanks to @bobbler and @Maat's excellent sleuthing on the other, it does seem that replacing the CFQ with a new PROM that the bps lobby have devised is a strategy that has been brewing for a long time. However if patients draw attention to that, we'll be the conspiracy-theorists!

I've lost who made the astute point, that usually the only evidence they can cite is on improvements on the CFQ. How will that be squared?

 

I wonder that, and note the references people make to Meyers-Briggs are probably more generally but the one job interview I’ve ever had where someone had added something like that in I was intrigued that it seemed to be more about asking the same questions (about who you are and you personality type) several different times in slightly different ways to see if your answers were consistent. ie more about catching out fibs/people who are just giving the answer they think people want to hear (which most think is the name of the game of job interviews).

The issue with trying to use this sort of thing in the arena of health is endless and then add in the issue of something where you are exhausting people and the repetitive nature itself has physical and psychological impacts. And yes there is research that if you keep asking people certain things then you change their answers just by the process of re-presenting them with the same questionnaire (just like when someone is put in a police interview and asked the same question over and over there is a reason for it).

I simply don't believe a PROMS is about assessing a service or any of the things listed in this circumstance - the very fact you think you can use the same thing for checking whether outsourcing delivery of knee operations that are done to a specification , along with other things they developed PROMS for gives insight into what they do and don't work on. This is supposed to be repeated to assess the service over time, whereas those were one-offs so necessarily it was chosen as a measure because it would have been weak for the former vs the latter. And that is just one example of the difference.

Before you begin thinking about the fact those referred for the knee ops are going to have been diagnosed by a clinician before and triaged by professionals, then likely checked afterwards at some point - certainly by GP putting in relevant updates if there are still ongoing issues, using a totally different surveillance mechanism.

So there is sleight of hand where the real conclusion is suggesting 'only PROMS' and tbh all they really concluded is that the CFQ is pointless and adds little, without identifying what is actually missing they are suggesting taking the other bits away and replacing with more of the same thing they've just criticised? SO the conclusion is inaccurate and ingenuine.

 

accurate narratives rather than accurate information, science, prognosis, diagnosis, the list is endless on the important things they don't mention.

says it all really about an area if the most important bit is the sales spiel that even a marketer would - in any other area due to legal requirements when they are making marketing claims requiring them to be based on real/proper evidence - be doing the writing on. Is this just about people who went into one profession because they fancied the pay-packet and power etc and actually want to be doing something different as their day job now?

 

When we compare this item to the PROMs I'm curious whether they have gone out of their way to fix this (ie whether this happens to coincidentally justify changes, or whether they've done the same thing with the PROMs measure replacing it anyway)?