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

Is that necessarily true? Subjectively? Or am I exhibiting the lack of it by asking?

 

But what is causing what? Your fatigue is most likely the caused by the physical condition that also limits you physically. I doubt it is the fatigue causing you to be physically limited, but the physical condition itself. Surely it is the BSP people who argue that fatigue is what prevents some people doing all they physically can?

If fatigue were the limiting factor, not physical condition, then if chased by a bull the odds are a person would still sprint pretty well anyway.

But with the physical condition being the limiting factor, they would far better not get in the bull's way in the first place.

 

I think my postings display both intelligence and fatigue - an excess of one and a lack of the other. I wish I could think clearly enough to work out which way round that is.

All I really meant was that, even if I accept the psychiatrists' concepts, decreasing my fatigue would surely be demonstrated in my subsequent physical performance. If not, if it was merely that we felt better but still couldn't do anything, that's hardly an effective treatment.

 

Absolutely.

Your intelligence is always a boost to our advocacy Graham .

 

Fatigue is part of the behavioural control system in the brain. It's a signal to limit activity and increase rest. Many other factors, such as motivation can counteract the behavioural effects of fatigue (if you're highly motivated, you'll persist in a fatiguing activity for longer).

Studies like PACE seem to demonstrate that manipulating some of the variables involved in this behavioural control system make no meaningful difference to the degree of disability (as one look at long term and objective measures of disability shows). I think the kind of CBT, and LP, are best viewed as motivation technique which has its place in certain situations but don't treat the underlying problem in ME/CFS. Manipulating this behavioural control system is probably even harmful because the low level of activity is an adaptation to the illness (see PEM, whose existence has been repeatedly and objectively demonstrated).

 

Yes. The BPS interventions are based on the assumption that the control system is faulty, and is thereby preventing people achieving a level of activity they are actually capable of, including that needed to break through any presumed deconditioning.

Making that assumption for people where their control system is actually in good working order, and is validly limiting activity to not trigger further physical harm, is downright dangerous and irresponsible. Like telling someone to lift a weight far exceeding their physical capability, but first administering pain killers.

 

@Barry

 

No @Graham I don't indulge in that . If I don't mean it I don't say it.

 

Good find, @arewenearlythereyet. Although if we want to use this scale in MECFS samples, it needs to be validated on that population. Controls just does not cut it.

 

Nicely said, @Barry!

 

Well, with intelligence, you can at least measure performance on difficult cognitive tasks. I would call that objective (although other may disagree).

But then there's all sort of other cans of worms mixed there... we would be here all day....

 

I found this questionnaire weird when I saw it the first time. (It is used in Berlin amongst others.) And this question, if you have problems with starting things, puzzled me exceedingly. I left it open. I discussed it with the doctor, and she explained it is not meant as lack of motivation (like in depression), but if - on an "energy" basis - I have problems to get new things accomplished, which I have to agree to, at least in part. But it's not lack of motivation, it's lack of "energy" - or whatever to call it, don't know. And it's always thinking about whether it might cause PEM and if it needs proper preparation to avoid it.

I don't recall the questionnaire asked whether your fatigue etc. disables you, but if you feel it more than usual. (I was told that means pre-illness level.) And to be honest, I have problems concentrating, finding words, and I feel more tired than before (but tiredness doesn't disable me) and so on...Don't the others?
It's definitely not all-imbracing, though.

I get the feeling I might have misunderstood it completely. Makes me uneasy somehow...

Blah -
Thanks for all your effort! I am so excited about what will happen.

 

Sorry to offend you, @petrichor.

As a new member, I thought you might be genuinely interested in knowing that other people's experience is a little different. I was in no way saying your symptoms were not awful or debilitating, not at all.

 

Thank you, I'm glad that you didn't mean that response in that way. I assure you, my primary limiting factor is PEM, and I meet the IOM diagnostic criteria perfectly.

I don't think that anything in my post particularly implied that wasn't the case, I was just talking about fatigue in a fairly general sense. It doesn't matter though, just a misunderstanding.

 

Absolutely ..once validated the test should stand up on its own, but I was suggesting a control group to validate it before it is used widely. this to validate the test method itself to see how precise any proposed scale is. Hence if validation shows that healthy people come out scoring high and not much different to your target group...you know the questionnaire/scale needs redesigning.

i suspect that the Chalder scale has had no proving done on it since it looks like it's been crafted fairly crudely, and seems to be missing an awful lot of basic best practice. I doubt that there was any validation in terms of elliminating bias from the scales used or the rather dubious wording of the questions.

 

You're welcome, @Cheshire! We had lots of help, but those other people (all S4ME members) preferred to remain anonymous.

 

I also wonder if there is an issue with presumtions of linearity? (I don't know if it's an issue, but worth asking). When the results are analysed, do the interpretations presume a linear scale? And if so, is it really linear?

 

Your link to Sense about Science USA & the pace trial no longer works. I did a quick search on the site, and came up with this - you might want to take a look.

http://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/

I haven't had time to read it yet, other than the list of corrections at the beginning.