Bristol CFS/ME clinic researching patients' problems with Chalder Fatigue Questionnaire

Mod note: This discussion has been split from a thread in the members only area.

Recently saw this on the Bristol Chronic Fatigue Syndrome/ME Service website (under Research):

https://www.nbt.nhs.uk/our-services...ndromeme-service/chronic-fatigue-syndromeme-2

don't know how long this study has been going on. Anyone have any details?
(amazing that they've only just realised there might be a problem with the CFQ).

 

If Chalder and co didn't have enough rubbish papers based around that damned questionnaire, they can now add another to the list about how to complete the god damn thing. How very meta.

 

More recently than May 2016, which is the only version on the Wayback Machine and did not have any references to such research.

The notable part is they only care about difficulties answering the questions, not whether patients believe the questionnaire is relevant to their illness.

 

Maybe they are realizing that it's not a great idea to ask chronically ill people to try and remember how they felt before the illness which may have been years and decades ago.

 

Seems unlikely a qualitative study on this from Esther Crawley & co will be useful. Wonder who decided that would be a good use of resources?

 

this
how much funding is this swallowing up?

 

Something tells me that the real motivation is that despite decades of trying they still can't get the answers they want and want to figure out how to do that. Not quite getting what it would mean to the dozens of studies that relied on it to produce some of the answers they wanted, just not strongly enough.

Of course the real problem is that the questionnaire is utterly useless because the questions are leading and ambiguous. It was created specifically to achieve desired answers and still failed at it. It is exactly as useful as a skull caliper to measure IQ and of equal scientific value.

 

However much it is, it should have to be paid back in full for being such a stupid waste of limited resources. All of it, PACE included.

 

could be related to this
https://www.s4me.info/threads/new-crawley-research-morph-cfs.1800/#post-31201

 

When there are different, more applicable scales in existence....
Are egos really so huge?

 

The only reason to explain why the CFQ was used at all in PACE is because Chalder was involved. It is an entirely useless tool for the evaluation of ME (and even CFS in the broader sense). So I would say yes. Walking-talking egos incapable of seeing beyond their limited abilities and insisting the voices in their heads are more reliable than objective reality.

 

https://www.nbt.nhs.uk/our-services...ndromeme-service/chronic-fatigue-syndromeme-2

 

It doesn't bode well when they talk of a Q that is 'easier' to complete. To me it means they are not listening or at least are still caught up in spinning their errors by turning it into our problem. We have difficulty filling in the Q as written. NO. We find the Q as written
not relevant to our health issues. That's on them. It's not because we have 'difficulty' and need it to be 'easier'.

Spare me the arrogance. They can never seem to admit any failing is on them.