S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire

The PACE trial analyzed their step test in two ways: one effectively measured energy expended against increase in heart-rate, and the other used the Borg perceived scale of effort. Both clearly showed no difference between the groups with CBT or GET and the group without.

 

Like I felt reading this paper just now... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739950/pdf/v057p00353.pdf

 

A quick look at the Conclusions and Discussion seems all they could identify is that it is an extremely blunt instrument, primarily able to discriminate between people who are fatigued and those who are not . And although the claim of evaluating change over time ...

... there is no proof in there that the degree of change can be evaluated. e.g. If someone scores 60 on one day, and scores 30 six months later, there is no proper proof that halving the number equates to their fatigue actually being half what it was before; any such assumption is just that ... an assumption.

 

It was used as the *primary outcome* in the iCBT trial published a couple of days ago.

 

I think it comes down to: they know no better, have nothing better, but totally believe in their supreme knowledge and infallibility. Very narcissistic.

 

Bolding mine: - first read that as discriminating AGAINST subjects......

 

Gosh, that's a stretch of the concept of PEM though. That makes it considerably broader - in a way that might make it even harder to define.

(my symptoms are massively affected by infections too).

 

Oh I think it can. Take a look... (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739950/pdf/v057p00353.pdf) and they can't even get the wording right in the instructions of how to fill the damn thing in!

The more questions you add, the more subtopics you cover, the more imprecise your 'scale' will become. There are multivariate statistical models that will capture the complexity that one probably needs to collect to model 'fatigue' and associated symptoms. But you lose all that information when you reduce it down to a single number. It becomes a proxy of wishy-washiness.

 

It seems that some psychologists seem to be remarkably bad at paying attention to advances in their own field. I'm currently reading Daniel Kahneman's Thinking, Fast & Slow - and so many times I've thought, "why isn't anyone applying this?". One example is the difference between the 'experiencing' and 'remembering' self, which is crucial to distinguish between when doing surveys. All these surveys fail because they seem to hopelessly mix them up.

His TED talk is here. The talk is mainly about happiness, but it's equally applicable to pain or fatigue.

 

I think this is very likely true. The more severe a persons's ME is, the less energy is available to their whole body, including running their basic life support systems. If their energy availability drops so low, that just to stay alive they are going beyond PEM threshold, then bang - just staying alive maybe pushes such a person into PEM, which would be the most appalling vicious circle. I think of this life support energy requirement as akin to the power an engine needs just to tick over; if the energy flows slower than that, the engine starts to run poorly, and at some point as power reduces even more, the engine 'dies'.

 

Another consideration. CCGs?/NHS ME and CFS Services have to PAY to use the Chandler Scale I am told as it is a "commercial product". Patients find it lengthy, onerous and challenging- and for what outcomes....?

It should be discontinued on lack of cost effectiveness and for dissipating the few precious £ spent on any ME services. We have tried (unsuccessfully) to challenge local commissioning asking them to address this within the service specification and contractual arrangements. CCGS have "patient participation" within their target for the year locally but, watch this space- they are not really taking our participation seriously. We have challenged the use of this scale within the business model for the 7 CCGs across Norfolk & Suffolk.

 

I'm having trouble reading at the mo and can't tell whether the NIH have now dropped the Chalder scale (they've just given an update on what they're doing but I can't read it).

 

Yes, that "How is your memory" question makes the whole thing seem ludicrous! How are you supposed to answer it? What does "My memory is more than usual" mean? To fit with the other questions, answering more than usual should imply more impairment but it sounds more like saying your memory is better than usual!

 

If I may butt in here with an observation that may or may not help. Haven't been able to read this thread as it got too big before I noticed it.

The whole problem of the CFQ in my opinion, is that it is not measuring what other people think (not most with the illness) it is because the assumptions are not mentioned explicitly.

• It is a measure of the subjective cognitions of a phobic person.
• It measures the subjective cognitions because in a phobic person, the cognitions are the target of treatment.

For that reason, it doesn't have to be objective.

If you were trying to cure a person of a fear of heights for example, moving them on from refusing to stand near a suspension bridge to agreeing to walk, however far, onto the bridge is a success.

Any improvement in a subjective scale from 'not thinking about heights' to 'confidence to walk halfway across and admire the view' would be viewed as a success. Without the improvement in the scale, the actual physical (objective) measures that follow are useless and not sustainable.

The basic point is that the CFQ and scale are useless to us because we are not activity phobic. The BPS does not care if there are no objective measures in a study, because they believe that the subjective cognitions are the hard part of the treatment, and objective results will follow on from an improvement in subjective measures.

This post is probably redundant, but I get frustrated by people pondering why it is a popular measure and used so often.

 

It's not listed by the NIH in their data elements for ME/CFS. The report from the fatigue subgroup doesn't mention it, even as "exploratory", despite that two other fatigue scales only previously used in research with crappy criteria were listed as exploratory:

The message may be that the CFQ is too bizarre and substandard to consider it as potentially being useful, even if validated in real ME/CFS patients.

 

Thanks! I wish the NIH would be clearer about it, if only to send a message that they're actually paying attention to and acting on feedback, which would make them look good and show that they welcome high-quality submissions from patients.