Review: Chronic fatigue syndrome and quality of life, 2018, Roberts

I've started a thread on this paper:
https://www.s4me.info/threads/expec...the-whoqol-bref-skevington-mccrate-2012.5721/

 

i have been asked about my sex life before in questionnaires - the correct answer is... Mind your own bl@@dy business.

 

Interesting. It can be frustrating with most questionnaires where you can't add comment.

 

The sentence started well but I question it has been proven the cognitive difficulties are related to sleep disorder.

 

Sounds too much like Quality of Life scores could be changed by changing attitudes, goals, et cetera.

 

Seems reasonable, though I suppose it's going to be hard to find a questionnaire that asks everything and at the same time is not very long.

 

The paper does highlight how the illness affects quality of life in many ways, so I suppose it is useful that way though not new to most of us here.

 

Right. So where you tell 'em you can't work, but want to
You can't socialise, but want to
You can't peruse hobbies, but want to
Most of your relationships have broken down isn't enough?

Discussing your sex life, or lacking it will add to that?

What if you're single, have taken a vow of chastity or there is some other reason you don't have sex?

 

I'm no expert on how sex might be discussed. But at the same time a lack of sex/intimacy may lead to relationship breakdown. Sometimes there are workarounds that might help couples if they were aware of them, though still the frequency will be likely a lot less. Also, some people may not feel able to have an open discussion with their partner. But probably the average clinician in a service for CFS is not likely to have much expertise in this area.

 

I presume this might be happening in other clinics in England i.e. that the Minimum Data Set is not being used any more.

 

I've never heard that complaint before about the SF-36 physical function subscale. I don't remember such a comment from the Cochrane review, but it was a long document and my memory is not so good.

 

Interesting if true.

 

(Minor point)
I wonder if this is the correct reference. It sounds like she's making a CFS-specific point.

 

A questionnaire I was asked to fill in phrased the sex question something like this:

"How often do you enjoy sex? "

My response was along the lines of -

"question is unclear, do you mean
1) how often do I have sex?
or
2) how often do I have sex and really enjoy it?
Because those two questions may not necessarily mean the same thing to everyone. Either way my sex life is none of your business."

I have a feeling they were glad to get rid of me!