Associations between daily routines and social support among women with chronic fatigue syndrome 2023 Rosenburg et al

Andy

Andy

Retired committee member
Background
Chronic fatigue syndrome (CFS) is characterised by extreme fatigue, as well as physical and cognitive symptoms. CFS is thrice as prevalent in women than in men.

Objective
To compare women with and without CFS concerning social support and participation in daily routine occupations, and to assess the relationships between the two variables among women with CFS.

Methods
This study included 110 women aged 24–69: 41 were diagnosed with CFS and 64 were not diagnosed with CFS. Participants completed the Occupational Questionnaire and the Medical Outcomes Study (MOS) Social Support Survey.

Results
Women with CFS reported lower participation in instrumental activities of daily living and work occupations than women without CFS. However, they spend more time resting and enjoying it. In addition, they reported less social support than women without CFS. Positive correlations were found between the number of close friends and time spent in play and leisure occupations and a negative correlation with sleep/rest.

Conclusions
Women with CFS participate less in IADL and work occupations and more in rest/sleep than women without CFS and their social support is attenuated.

Significance
Intervention plans should be developed for women with CFS, focussing on expanding their participation while considering their social support resources.

Paywall, https://www.tandfonline.com/doi/full/10.1080/11038128.2023.2200580
 
Abstract said:
However, they spend more time resting and enjoying it.
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A pity it's paywalled. I'd be interested to see what on earth led them to this 'interesting' conclusion. If only. :banghead:

This abstract is a perfect example of the dangers of questionnaires in the hands of clueless researchers. If they had actually listened to any of the patients they could never have come up with such daft, insulting and harmful rubbish.
 
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Yea if you’re ill you can enjoy stuff up to a point even if you’re feeling bad. If that’s the only enjoyment you get you make the most of it. If they want me to participate more than I already manage they need to have a magic wand.
 
is this seriously research that says 'people who are ill are able to participate less in ADLs & have less social contact' ?

Is that seriously what i'm reading?

Edited to add: thats a serious question.... i havent the energy to read it all & cant seem to make sense of what i'm reading
 
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Academia really needs to get serious about useless research like this. This foolish nonsense is a complete waste of public funds and serves absolutely no purpose whatsoever. Bits of intelligence without a single bit of wisdom, it's like they hear words they don't understand and find nothing wrong with pretending the understood any of it.

I'd suggest someone look into why is it so common for research to be so utterly useless to be performed again and again, but it feels pointless knowing that the very same process that is so fond of useless research would simply make it useless and uninterpretable anyway.

The more I get exposed to medical research and the more obvious it becomes that the hard science stuff is actually far easier than the soft skills part, the human element where there are no mathematical or experimental proofs, where ambiguity reigns supreme. This is the hard stuff. The math and hard science stuff is actually easy enough that it'll be the first part entirely managed by AIs.

They just faceplant so hard when they bring the wrong skills to a problem, so hard they don't even understand that they're not doing anything useful.
 
JemPD said:
is this seriously research that says 'people who are ill are able to participate less in ADLs & have less social contact' ?

Is that seriously what i'm reading?
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It seems so. Actually it's a bit more, and a bit worse than that, because they then go on to say "and we need to get these people who are participating less to participate more".

It's very much like the BPS GET paradigm - "these sick people are doing less exercise; to make them well, we need to make them do more exercise".
 
[Satire]

CFS patients drink less alcohol, and drinking alcohol is associated with increased social activity, therefore to improve their social activity they need to drink more alcohol. Buy them all beer/wine/spirits! They need it.

Andy said:
focussing on expanding their participation
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Sick people participate less. What we need is more research on treating our illness. The rest will take care of itself in time.

Is this even a serious argument? Tell me it did not come out on April 1st! I know it says accepted April 3 but maybe that was a typo, or was actually accepted on the first and just not updated for two days?

Next are they going to tell us diabetics don't eat enough sugar? I suspect that is associated with less social participation too.

If I cranked up my social activity a few notches I would be in permanent crash mode. Then my social participation would decline even further. I suspect most of us would be in the same predicament

They really need to pay attention to causation. If they find a useful treatment or cure that is objectively measurable I bet we would participate in so many things, trying to catch up for lost opportunity. Trying to treat a symptom without treating the cause is in the best case merely a band aid. In the worst its poison.

Rant over, the sun is coming up.
 
alex3619 said:
Is this even a serious argument? Tell me it did not come out on April 1st! I know it says accepted April 3 but maybe that was a typo, or was actually accepted on the first and just not updated for two days?
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i thought that too. its so absurd i thought i'd misunderstood

alex3619 said:
They really need to pay attention to causation. If they find a useful treatment or cure that is objectively measurable I bet we would participate in so many things, trying to catch up for lost opportunity.
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exactly. I sobbed yesterday about my inability to participate. The exclusion is like a punishment. And its not that i dont have enough social support but that i am too *&$$!£* ill to participate in it. If you are so ill that talking & being with people makes you worse then you cant access the support.

It drives me mental that all these researchers and doctors and oh :banghead: just everyone it seems, is so ruddy obtuse.

The person who happened to be in my sitting room when i burst out crying because of being so lonely and excluded (my osteopath who is a lovely kind person), suggested setting a goal to see one person socially this month.... and i just, i despair, i dont understand why people are unable to hear me when i say i am too ill to do things. Its not a failure to set a goal FFS! The goal is always present, but deciding to do something doesnt magically make you able to do it.

setting a goal isnt going to make a diabetic be able to eat a large toblerone in 1 sitting without serious consequences is it, and setting a goal to see a friend isnt going to make me magically able to do it...

I am just baffled why people who seem to be listening, just cant hear us. i genuinely dont get it :confused:

the concept just isnt that hard.
 
JemPD said:
I am just baffled why people who seem to be listening, just cant hear us. i genuinely dont get it :confused:
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I'm baffled too.

Putting aside the insurance companies and CBT app sellers who have a financial reason to minimise the problem, why do these people believe the BPS idea that us just being more positive, and setting goals will make the difference?

Is it that it makes them feel safe, because they know how to set goals and they have friends, and so they won't end up being sick?
Is it that it makes them feel superior, or at least able to be the helpful caring person they want to be, able to fix people without having to learn all that difficult biochemistry stuff?

The journal editors and the peer reviewers don't seem to be very good at stopping this sort of paper, which really is a sort of hate speech put in a nice box with a pretty bow on top. Somehow, we have to inform people new to the illness to just not engage with this sort of research. If a researcher wants to know how many friends people have or how much they enjoy resting or if they are afraid of spiders or have perfectionist tendencies, they need to be told to mind their own business.
 
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Hutan said:
which really is a sort of hate speech put in a nice box with a pretty bow on top.
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indeed

Sid said:
The bit about resting & enjoying it, it’s a shocking thing to see in an scientific paper. I hope it’s just non-native English, not malice.
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yes. I mean who doesnt 'enjoy' resting when doing otherwise is torture.

I have heard people with migraines say things such as 'no please dont turn the radio on i'm enjoying the silence'.... but every dumbo knows that they dont really mean 'enjoying' it the same way one enjoys their favourite food/music/exercise/hobby etc. Relief and less suffering isnt 'enjoyment'. Putting your feet in very cold water is utter indescribable bliss if they are in agonising burning pain from a major burn... but its not what you would even call pleasant if they arent! Relief of suffering is always 'enjoyable', doesnt mean 'enjoyment in the standard sense.

edit: i changed 'burning hand' to feet, because currently my feet are in major burning pain & a bowl of cold water is ecstasy! but previously cold on my feet would have been a very unpleasant experience brrr
 
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alex3619 said:
[Satire]

CFS patients drink less alcohol, and drinking alcohol is associated with increased social activity, therefore to improve their social activity they need to drink more alcohol. Buy them all beer/wine/spirits! They need it.
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Did you come up with this before or after getting buzzed?
 
RedFox said:
Did you come up with this before or after getting buzzed?
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I wish. I would crash for a month if I drank alcohol. Actually its a biphasic crash, two different crashes, one for a few days, and one for weeks.

The action of participating in social activity would crash me too. Its not about can I do it, its about consequences. I have had the experience in the past where friends of mine invited me to activity and kept up with more activity (board games), without realizing it was pure torture for me. Similarly my much older sister kept walking with me around a department store many years back. I wound up sitting in a café and waiting for her to finish. Or a Christmas party where I found a dark room and sat for hours.

Participating in social events is not a good thing if its pure torture. If researchers ignore consequences they are not thinking clearly.
 
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