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

Can you please stop assuming that just because the CFQ is a number that it can be treated like a measurement of anything? It is a complex composite output. It cannot be treated like length, or intensity. It is debateable whether it even measures fatigue! It certainly shouldn't be used as anything more than a single-use diagnostic indicator - and I'm not even sure it should be used for that either.

Just because you have a number, doesn't mean that it magically takes on the properties of a measurement.

 

On reading this I was reminded of the saying, in musical interpretation, that the notes are not the music We face the same problem, the words are not the symptoms.

 

Absolutely. We could do with identifying quality of fatigue as well, in my opinion.

 

I do not believe there is the vocabulary to differentiate, and, if there is, 99% of sufferers are unfamiliar with it.

 

Here is something I bet you didn't know. Well, I didn't.

"A chalder is an ancient Scottish dry measure...."

What more can I say.

 

Is there no way to actually have some objective measures in a fatigue questionnaire?

 

Agreed. Even if you ask someone about an objectively measurable quantity, the response itself will inevitably be subjective. But it is more tricky with something like fatigue, because fatigue is not an objectively measurable quantity; fatigue is itself a subjective quantity, probably with all manner of definitions, opinions and interpretations of what it even is.

 

Not sure how, for reasons already highlighted in other comments on this thread and other threads - how can 'feelings of fatigue' be other than subjective both in responses to, and interpretations of those responses to useless questionnaires such as under discussion, which add absolutely nothing of worth to understanding this bloody awful disease, or any other most likely?

I was reminded of one of the tests I undertook with a Community Physiotherapist in the Autumn of 2017. I was asked to move from a sitting to standing position without the use of aids .. I managed just fine, and she mentioned that was much better than when she last saw me in 2012. Indeed it was, but I noted that one-offs are fine, if asked to do repeatedly, then that would likely be a different story.

I have a test in my toolkit for that she says .. could you repeat the exercise 5 times when I say start; she used a stopwatch. I could only manage this exercise 3 times; the last was a real struggle for sure, and I was informed that it took me 45 seconds to do even this minimal activity. I was informed that a normal result would be to complete the test in no more than 15 seconds. At that point, she had a 'lightbulb' moment, and realised that one of my main physical symptoms is "fatigability", NOT fatigue .. a minor breakthrough for me, and the first Health Professional to date, to recognise this in such terms.

On a roll, I asked if she had a test in her toolkit regards Orthostatic Intolerance issues; back came the answer, is that she would take a sitting BP and pulse, and then repeat after standing for 3 minutes; may well catch the most severe, but whether you experience OI issues within 3 mins or 10-30 mins, it is still an awful issue to have to deal with .. one 'lightbulb' moment at a time I guess, and thankfully, I wasn't up to doing that test at that time.

By way of summary, I think the point I'm trying to make (in my usual roundabout way?), is that there are already 'more objective' physical/cognitive tests available for use with patients, which do not have to take up a lot of time, and could be done in the GP surgery and/or the type of testing that ME/CFS clinics should have been doing all along, if they really wanted to understand how this disease impacts on our daily lives. It would certainly be more informative to undertake these kind of tests, than have patients fill out useless questionnaires, such as the one in question.

Could these type of tests also be useful in helping to identify/differentiate PEM? For another discussion happen .. but not for me, wiped out some.

Wishing everyone improved health, and every happiness, John

 

Absolutely. I think the BPS'ites like to think that because they have converted things to numbers, those things somehow acquire magical objectivity status. But you could answer one of their questionnaires by rolling a dice, or let a snail crawl over it and see where it poos. Still get numbers.

 

But this is my whole point. The BPS crew implicitly insist there is a relationship, and a simple one at that. "Please write down these numbers, and because we are clever psychiatrists, you can trust us that those numbers validly reflect your level of fatigue". Which is cr*p of course, because any relationship there might be is undeterministic and unknown ... as you say, not a relationship in any real sense of the word. But to reiterate my point: They treat it, and plug it into their results and conclusion, as if there is a nice simple linear relationship. Which is why it is all such a load of cock.

 

I suppose they would argue that fatigue is a subjective measure - by definition. That if you use objective measures, you're actually measuring something else - physical function or mental function or whatever.

I think there's a question as to whether the subjective feeling of fatigue is as important in MECFS as people seem to think it is.

If you wanna measure the sensation of fatigue, then what I'd really like to see is some open-ended interviews first, where real patient descriptions of fatigue can be extracted then put to the vote.

For example, I would describe my fatigue as "On bad days I have a 'crushed' feeling, like a concrete slab is sitting over my rib cage. On these days, even doing a small thing makes me feel quite breathless, like I've just run up a few flights of stairs".

 

Here's my twopeneth.

Questionnaires are useful as directional tools providing all efforts have been made to elliminate bias. You also need to accept that bias may still exist when you interpret the results.

The Chalder stuff here is absolute nonsense in terms of the many layers of mistakes in the design and the lack of validation of the test method and comparison to objective measures as has already been mentioned.

Some measurements however are subjective ...taste of food for example..there is no machine to do this. The taste of the food is the sum of many things to do with genetics, age, experience, culture, not just the function of taste buds. Even texture in the mouth can't be measured easily outside the mouth. Because the annoying thing is that mouths are attached to brains which interpret the signals they are receiving.

there are a multitude of machines that can measure texture in different ways (load cell, compressed air gimble; you can crush, squeeze, puncture etc and give you an SI measurement. However these measurements give you a very blinkered small slice of what's really going on. The trick comes to understand whether it is the brittleness, smoothness, grittiness chewiness etc. Or a combination of many things that is important for why it's a good or bad texture. This is where the questionnaire comes in to link up the machine results with the sensory perception of the texture...these aren't always apparent. And if you do the machine without the subjective testing you may be measuring the wrong thing completely.

However it is only a fool that bases all of their findings on subjective questionnaires.

In the case of fatigue it's the same as the food texture example. People's interpretation of the word fatigue may mean different things but it is almost certainly the sum of several things, same with cognition (memory, coordination, reaction speed etc )

Personally I think these things need to be broken down both by questionnaire and by more objective measures. Just look at how confused we all are about the word fatigue?

Sorry I'm rambling but hopefully that makes sense. It's tempting to say that all questionnaires are rubbish because someone abused them once, but that's a debating point rather than reality. Questionnaires have their place and it would be quite difficult to get to the truth of the matter without them working alongside objective measurements.

 

Exactly. Those who coined the CFS label must be very pleased with themselves.

 

Perhaps then we need to move away from "fatigue" altogether and focus on physical consequences. If psychs want to claim that they have cured a patient's perception of fatigue, should our argument simply be that this is irrelevant: the physical consequence needs to have been changed? After all, reducing my concept of fatigue sufficiently for me to push on through, then suffer catastrophic consequences, is hardly a miracle cure.

 

I think any process that involves pushing on through regardless of the measurement is a bit pointless and potentially harmful. What we need is a measure of PEM frequency and severity. For PWME I think "fatigue" is a smokescreen. Apart from being difficult to measure it will be almost certainly conflated with tiredness...and I'm pretty sure everyone gets tired on a regular basis regardless of whether they have ME/CFS or not. Perhaps it's better to have a new thread on the potential objective and subjective measurements for PEM?