A rating scale for fibromyalgia and chronic fatigue syndrome (the FibroFatigue scale), 2002, Zachrisson et al

Saw this used recently in a study unrelated to ME and thought a thread about the scale might be useful.

Paywalll, https://www.sciencedirect.com/science/article/abs/pii/S0022399901003154
Sci hub, not available via at time of posting

 

They base the quality of a scale on a test called the 'inter-rater reliability test'.

Having had some years now to consider how this sort of thing happens, unsurprisingly, I see some problems that might creep into the development of a scale that virtually none of the scale makers have any personal experience in with regard to what is being tested.

So, given that they all come from the same school of thought about MUI (medically unexplained illnesses) and that the concepts of MUI are pre-conceived notions that are agreed upon (the BPS model) all that's needed is to get the various testers to align with the dominant groups specific details and wording of what is going to produce the 'most relevant' outcome.

Maybe there's more to it than that but I don't think this creates an objective test to validate anything. None of the prior assumptions that go into the conception of the test are ever tested. And they are never tested by asking anyone taking the test. The validity comes from essentially forming a consensus by one group more persuasively arguing for their interpretation. That does work sometimes if the basis for arguing the details has a foundation in reality. Here not so much.

If only we could be a fly on the wall in some future century where this whole body of research gets re-evaluated as "The Mind of the 20th-21st century Researcher in psychological Theories of MUI"

And then wait for the meta-analyses to roll in. (I'm feeling a bit cheeky today).

 

In regards to the FIQ, by default I'm in no pain but I'm very severe, I'm limited by how low my threshold is. Scales need to measure the threshold for worsening symptoms, how long the worsening lasts, what lowers your threshold, etc.

Another problem is that I'm so severely disabled that I could improve a lot and still score the lowest on the "Were you able to" section.

 

It's funny how they never ask the patients as to whether they find the questions to be understandable/relevant/useful. They've had 18 years to do it too.

 

As opposed to my case, where I was not much limited in moving around, but had unpleasant pain.

This may also say a lot about the nature of the disease. But if one doesn´t ask adroitly and ignores basic facts, one will miss the subject.

 

Notably, they did publish the actual questions in the manuscript, but they're the usual nonsense.

Each question has a short blurb to guide the scorer on severity.

Note the bit "Disregard any statement about the cause being organic." mhmm.

Also, I've never heard the words "micturition" or "obstipation", again suggesting the target audience is medical practitioners. I cannot imagine many of you dear readers thinking this is a worthwhile questionnaire.

 

(Gottfries, Zachrisson and Regland all used to work at the biomedical Gottfries ME/FM clinic, that has sadly recently been closed down.)

 

That's so evidently absurd I don't know how anyone can find that credible after even a second's thought.

The food industry is actually more competent at these things, what an embarrassment. In the early half of the 20th century, the food industry was growing massively and worked with marketing firms and consumer psychologists to assess their products, how to better market them, what makes people like something over another. Millions and millions were poured in trying to decide whether stuff like chunky meat sauce would sell better than full veggie or whatever.

The end result? Complete free-for-all. Nobody can tell or predict consumer choices and no one has magical skills allowing them to understand what people need or want because no one has ever had a life experience that is as diverse as what's possible in populations of billions. Give people choice, let them pick and choose and assess based on those choices. In a nutshell: completely organic experiments. Nothing can control for broad patterns of human behavior.

The basis of the psychosocial ideology seems precisely to be people who genuinely believe they understand complete strangers' thought processes and behavior better than we know it ourselves, allowing them to be able to objectively gauge the subjective experience as dispassionate observers (nevermind the excessive bias). And the freaking food industry is actually decades ahead in having understood that's not a thing and at best you can use large numbers to predict broad patterns of behavior but never have the ability to predict any one person's behavior.

Growing the hell up over this, good grief, to continue with demons and ghosts so late in the information age is pure cringe embarrassment.