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"Perspectives of Time and Occupation: Experiences of People with CFS/ME" (Pemberton & Cox)

Dolphin

Senior Member
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17,567
From: http://www.tandfonline.com/doi/abs/10.1080/14427591.2013.804619#.U8QSUJRkTmc
Journal of Occupational Science

Perspectives of Time and Occupation: Experiences of People with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

DOI:10.1080/14427591.2013.804619

Susan Pemberton a* & Diane Cox b

Published online: 04 Jun 2013

Abstract

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling condition that disrupts the normal rhythms and activity patterns of daily life.

Although temporal dimensions such as time use, tempo and temporality have an important relationship to occupation there has been limited study of these factors within CFS/ME.

This qualitative study explored how people with CFS/ME perceived the relationship between time and occupation through the experience of their illness.

A social constructivist approach to grounded theory involving in-depth interviews with 14 participants, recruited through a specialist service in the UK, revealed emerging concepts of accelerating time before illness, with a focus on imminent tasks.

During illness actions slowed, but contrasted with the experience for some participants of time disappearing.

As participants adjusted to the condition there was a greater focus on being present and consciously slow, as a sense of control within time emerged.

These findings suggest that further consideration is given to the broader aspects of time and rhythm within occupational science, evolving from the current clock time perspective to incorporate event time and resynchronisation of occupational balance.

Keywords

Chronic fatigue syndrome, Myalgic encephalomyelitis, Time, Rhythm, Occupational balance
 

Dolphin

Senior Member
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17,567
I read this. There were bits that were a bit interesting, about people slowing down and finding meaning in different activities.

But I found it slow going: I have nothing underlined until the "Findings and Discussion" section (after around 5 pages of text, excluding the abstract).

There is a chance because I'm not familiar with the way of saying things, this is due to a lack of knowledge on my part. However, I can understand psychological papers generally. It reminded me of some sociological papers I have read where they talk in the abstract without it being clear exactly what they are saying or whether what they are saying is justified.

Then when I got to the findings section, I found it more interesting, although they did revert occasionally to their earlier style.
 

Dolphin

Senior Member
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17,567
Because there is no control group, I think it could appear to others that the lives of people with ME/CFS before becoming ill were more abnormal than they actually were. I think lots of people try to squash a lot into their lives even if it's just rushing to watch TV, make time for computer games or whatever.

The authors mention possible difficulties interpreting the data
Limitations

Although increased pace could be a feature of action proneness, as participants reported retrospectively, this may simply be an amplification of the contrast with slowness experienced at the time of interview. Some participants specifically mentioned the value that society gives to performing at speed and therefore may have sought this attribute as part of representing themselves. As a small qualitative study it is not possible to define any causality between pace of life and the illness, although some participants felt that this was relevant.
 
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Snow Leopard

Hibernating
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South Australia
I appreciate sociological research, but a lot of this just looks like cherry picking to suit an interesting narrative.

The key point, is that there are selection biases both in choosing the therapy, and choosing to participate in the study. This is where myths such as "CFS patients were former high achievers" etc start. It is not that CFS patients are more likely to be high achievers, but rather those that were are also more likely to be visible. Hence self-selection biases.
 

A.B.

Senior Member
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3,780
Furthermore, even if we assume that the average CFS patient does in fact experience greater exhaustion/stress/difficulties before the illness, we do not know if this is a contributing factor, or a perception caused by a slowly progressing illness that hasn't yet become severe enough to become obvious. Perception as daily activities feeling more exhausting than before. A good portion of CFS cases have a slow onset, so one would expect there to be such a trend. This is why I'm against psychology studies - they do not actually give any answers while still making vague claims or suggesting things that can easily mislead the reader.
 
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IreneF

Senior Member
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1,552
Location
San Francisco
I'm not sure what this is supposed to mean, other than being utterly obvious. Staring at the ceiling when you can't get out of bed sure makes time slow down.