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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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):

We are also involved in another study which aims to understand more about how people living with CFS/ME complete a commonly used fatigue questionnaire, the Chalder Fatigue Scale. Some of our patients have found this questionnaire difficult to complete, so we are inviting patients to take part in this qualitative study which will help us get a fuller understanding of these difficulties. This research will help us to improve the questionnaire, or to choose an alternative questionnaire which patients find easier to complete.
Click to expand...
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).
 
Last edited by a moderator:
Sly Saint said:
don't know how long this study has been going on. Anyone have any details?
Click to expand...

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

Sly Saint said:
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).
Click to expand...

The notable part is they only care about difficulties answering the questions, not whether patients believe the questionnaire is relevant to their illness.
 
Last edited:
Sly Saint said:
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).
Click to expand...
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.
 
could be related to this
https://www.s4me.info/threads/new-crawley-research-morph-cfs.1800/#post-31201
We initially tried to use the CHQ on children
(developed for children but not tested head to head with the SF36) with CFS/ME but
they told us the activities were not relevant and it did not adequately reflect their
disability. We therefore changed to the SF36 on the request of the children in our service
and have now used this for 6 years in over 1000 children with CFS/ME. We rarely have missing data on this reflected in our publications.
Click to expand...
During this study we will examine young people’s views and understanding on completing the SF36 (and other inventories) and will be able to find out if there are issues over the interpretation of the questions.
If there are, we intend to use this to apply for further funding to develop a CFS/ME measure of severity.
Click to expand...
 
Amw66 said:
When there are different, more applicable scales in existence....
Are egos really so huge?
Click to expand...
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.
 
We have also just completed data collection for another study which aims to understand more about how people living with CFS/ME complete a commonly used fatigue questionnaire, the Chalder Fatigue Scale. Some of our patients have found this questionnaire difficult to complete, so we invited patients to take part in this qualitative study which will help us get a fuller understanding of these difficulties. This research will help us to improve the questionnaire, or to choose an alternative questionnaire which patients find easier to complete. We are currently analysing the data, and we are very grateful to the patients who gave their time to take part.
Click to expand...

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.
 
You must log in or register to reply here.
Back
Top Bottom