Trial Report What is the occupational impact of myalgic encephalomyelitis/chronic fatigue syndrome for adults living in Australia?, 2024, Thomas

https://journals.sagepub.com/doi/abs/10.1177/03080226241254720

Thomas R, Hughes J, Kotzur C. What is the occupational impact of myalgic encephalomyelitis/chronic fatigue syndrome for adults living in Australia? British Journal of Occupational Therapy. 2024;0(0). doi:10.1177/03080226241254720

Abstract

Introduction:

Occupational recovery for people living with myalgic encephalomyelitis/chronic fatigue syndrome requires better assessment and understanding of the occupational impact of this debilitating condition. This study explores the lived experience of Australian adults with myalgic encephalomyelitis/chronic fatigue syndrome using the Model of Human Occupation.

Methods:

The research design was a cross-sectional descriptive study, and participants were recruited via social media to complete an online survey. A Model of Human Occupation Tool, The Occupational Self-Assessment, captured an individual’s perceptions of occupational identity and competence.

Results:

Results were analysed using descriptive statistics and non-parametric tests. The free-text responses were summarised. Twenty-nine participants completed the Occupational Self-Assessment. A decrease in occupational participation across all domains was evident. Qualitative themes of loneliness, feeling confined, feeling like a burden and loss of previous life/roles were collated, showing an adverse impact on occupational identity. A lack of independence and control showed a reduction in occupational competence.

Conclusions:

The study confirmed the impact of myalgic encephalomyelitis/chronic fatigue syndrome on occupational identity and competence. These individuals struggled with occupational adaptation and would benefit from occupational support. Occupational therapists could use the Occupational Self-Assessment to identify areas of need, set goals and facilitate better occupational adaptation.

 

It would be interesting if there is any research comparing occupational outcomes and support for me/cfs vs other conditions properly longitudinally.

I’m brave enough to suggest the old guidelines had potential to infer things like CBT might be a cure all for me/cfs when reducing hours and sorting transport etc might have been a needed focus for longer term longevity for me/cfs .

And such misnomers might have affected, via creating a ‘stigma’ by its misinformation that if someone wasn’t back to normal from CBT they were defective and unmotivated (pretty much buzz words in many workplaces) and their sick leave or lateness or seeming exhausted then being ‘unexplained’ compared to other conditions with more accurate information, peoples opportunities offered and how their ‘effort’ was perceived.

imagine someone with a condition that wasn’t undermined but instead the person had adapted hours within which they could be at their best and their health reliable being perceived as ‘a good and smart employee’ vs the person left to stretch that same talent beyond the hours their health allowed. And them instead seen as having problem behaviour

so they might be managed out, not having opportunities to progress ‘because they can’t cope’ vs the framing for someone with another condition being given short hours and a nearby parking space. All sorts of ways of hiding the ‘had to leave due to their health vs the adjustments mismatch’ that the old guidelines might likely have played a part in. ?

this goals terminology makes me said as it suggests behaviourism where everything is contingent on being temporary to a far shorter timeframe than the illness operated for due to inaccurate claims a ‘treatment’ that didn’t work was some sort of cure.

Worse I suspect the research fir said treatment was propped up by the coercion of behavioural psychology forcing those with me/cfs to have no choice but to worsen their health or be sacked which any illness might manage for 6months on the basis of desperation due to finances, making their health and prospects after that so much worse. Yet the measure was perhaps timed to that shorter time frame.

the only way to remove such coercion / con pushing people to ruin their health further to achieve this short term is surely that 3yr employment outcome (bith level of job and if still working) is the only primary acceptable.