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

[Andy]

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

Objective: To construct an observer's rating scale sensitive to change for measuring severity and treatment outcome in fibromyalgia (FM) and chronic fatigue syndrome (CFS) patients.

Methods: A selection of items from the Comprehensive Psychopathological Rating Scale (CPRS) were repeatedly rated and used as outcome measure of a 24-week treatment study. In the study 100 women, fulfilling the criteria for both FM and CFS, received intermittent injections of a staphylococcus toxoid or placebo. Nine CPRS-items with high baseline incidence (cutoff 70%) were extracted and validated against global ratings and the Fibromyalgia Impact Questionnaire (FIQ). The fibromyalgia and chronic fatigue syndrome rating scale (the FibroFatigue scale) was thereafter formed based upon the extracted items and three supplemented ones. The interrater reliability was tested in 27 consecutive patients of both sexes.

Results: The FibroFatigue scale is an observer's rating scale with 12 items measuring pain, muscular tension, fatigue, concentration difficulties, failing memory, irritability, sadness, sleep disturbances, and autonomic disturbances (items derived from the CPRS) and irritable bowel, headache, and subjective experience of infection (new items). There was a statistically significant correlation between the CPRS-extracted items and global ratings as well as with the FIQ. The interrater reliability of the new scale was excellent (correlation coefficient .98), irrespective of the patients' gender.

Conclusion: The FibroFatigue scale seems to be a reliable and valid measuring instrument with capacity to monitor symptom severity and change during treatment of FM/CFS patients.

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

 

[Snowdrop]

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

https://www.alleydog.com/glossary/definition.php?term=Inter-Rater+Reliability

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).

 

[DigitalDrifter]

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.

 

[Snow Leopard]

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.

 

[spinoza577]

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.

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.

 

[Trish]

I found a PDF of the article published in 2001 in the Journal of Psychosomatic Research.
http://oml.eular.org/sysModules/obxOml/docs/ID_20/Zachrisson, O., B. Regland, et al. (2002).pdf

Within psychiatry, observer’s rating scales are often considered more valid and reliable than self-rating scales. In this study, we wanted to construct a new observer’s rating scale aimed at the assessment of core symptoms and treatment outcome in FM and CFS. Due to substantial overlap in symptomatology between FM and CFS, we decided to develop a scale suitable for both conditions. The scale should be based on the CPRS items that we had used within a double-blind treatment study and their psychometric properties be tested against global rating scales [17] and the FIQ.

My bolding

Scales used to design and validate the FibroFatigue scale The fibromyalgia and chronic fatigue rating scale (the FibroFatigue scale) was derived from 15 items of the neurasthenia subscale of CPRS [15] (Table 1). The ratings were performed within the study by three registered nurses trained by an experienced CPRS rater. An interview was done at baseline, and new interviews were done once a month during the 24-week trial. At every interview, the same rater, who was blinded to whether the patient was given active treatment or placebo, assessed the patient. The duration of the interview varied but was usually less than 20 min. The original CPRS [21] comprises 65 items covering a broad range of psychiatric symptoms both of neurotic and psychotic dimensions. The scale was intended for treatment evaluation and to serve as a pool from which items could be selected to construct scales for various syndromes. [...] The reliability has been shown high between disciplines (psychiatry, general practice, nursing, and psychology) and the instrument has been shown highly sensitive during trials on various psychiatric groups of patients (e.g., depression, schizophrenia).

My bolding

So they started with a psychiatric evaluation tool based on neuraesthenia. The found which items correlated best with other outcome measures in the blinded vaccine treatment trial, then adapted and added a few new items, and came up with their list.
Each of the items has detailed descriptors to help the assessor to rate where the patient rates on that item based on interview.
So you score from 0 to 6 on 12 items that they concluded from their data were relevant to measuring change during a treatment trial. The concede that FM is different from CFS, but decided there is enough overlap for it to be valid for both.

It seems a much more thoughtful and thorough approach than the back of the envelope Chalder Scale, but the main problems I have with it are that by starting with a psychiatric scale, they picked up factors that are related more to being ill than to ME and that are likely to improve through feeling positive from being part of a trial, namely sadness and irritability. Improvement in these seems to be given the same weight in the scoring as improvements in pain and fatiguability, which are more relevant. And of course there's nothing about ability to function, or PEM.

 

[Snow Leopard]

I found a PDF of the article published in 2001 in the Journal of Psychosomatic Research.
http://oml.eular.org/sysModules/obxOml/docs/ID_20/Zachrisson, O., B. Regland, et al. (2002).pdf

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

A.1. Aches and pain Representing reports of bodily discomfort, aches and pain. Rate according to intensity, frequency, duration, and requests for relief. Disregard any statement about the cause being organic.
A.2 Muscular tension Representing the description of increased tension in the muscles and difficulty in relaxing physically.
A.3. Fatigue Representing the experience of debilitating fatigue and lack of energy and the experience of tiring more easily than usual.
A.4. Concentration difficulties Representing difficulties in collecting one’s thoughts mounting to incapacitating lack of concentration. Rate according to intensity, frequency, and degree of incapacity.
A.5. Failing memory Representing subjective disturbances of recall compared with previous ability.
A.6. Irritability Representing the subjective experience of irritable mood (dysphoria), anger, and having a short fuse, regardless of whether the feelings are acted out or not. Rate according to intensity, frequency, and the amount of provocation tolerated.
A.7. Sadness Representing subjectively experienced mood, regardless of whether it is reflected in appearance or not; includes depressed mood, low spirits, despondency, and the feeling of being beyond help and without hope. Rate according to intensity, duration, and the extent to which the mood is influenced by events
A.8. Sleep disturbances Representing a subjective experience of disturbed sleep compared to the subject’s own normal pattern when well.
A.9. Autonomic disturbances Representing descriptions of palpitations, breathing difficulties, dizziness, increased sweating, cold hands and feet, dry mouth, and frequent micturition. Rate according to intensity and frequency and duration of one or many symptoms.
A.10. Irritable bowel Representing a subjective experience of abdominal discomfort or pain along with descriptions of altered stool frequency or diarrhoea/obstipation, bloating or feeling of distension. Rate according to intensity, frequency, and degree of inconvenience produced.
A.11. Headache Representing reports of discomfort, aches, and pain at the head. Rate according to intensity, frequency, duration, and requests for relief. Disregard any statement about the cause being organic.
A.12. Subjective experience of infection Representing descriptions of symptoms (e.g., mild fever or chills, sore throat, lymph node pain) and reports of infection (e.g., infection in upper/lower respiratory tract, urinary tract, gyn, derma). Rate according to intensity, frequency, and duration and also requests for treatment

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.

 

[Trish]

Also, I've never heard the words "micturition" or "obstipation", again suggesting the target audience is medical practitioners.

I have heard of micturition (peeing) and guessed correctly that obstipation was something to do with constipation, but the questionnaire isn't given to patients, the answers are elicited by interview with a nurse who would understand the terms and would translate them into the patient's language.

I agree with your point about the questions not getting to the bottom of what patients are actually experiencing, and not being a useful measure of whether a treatment is effective in improving ME in a meaningful way.

 

[mango]

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

 

[rvallee]

Within psychiatry, observer’s rating scales are often considered more valid and reliable than self-rating scales

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.