Living with myalgic encephalomyelitis/chronic fatigue syndrome: Experiences of occupational disruption for adults in Australia, 2021, Bartlett et al

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forestglip

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Living with myalgic encephalomyelitis/chronic fatigue syndrome: Experiences of occupational disruption for adults in Australia

Chelsea Bartlett, Julie L Hughes, and Laura Miller

First published online May 27, 2021

Introduction
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood, highly stigmatised health condition that has widespread impacts on the individual. Currently, there is limited understanding of the ME/CFS experience from an occupational perspective within Australia. This study aimed to explore the lived experience of ME/CFS and subsequent disruption to occupational participation for adults living in Australia.

Methods
Using descriptive case study design, five participants with ME/CFS in Australia completed semi-structured interviews. Reflexive thematic analysis was used to analyse the qualitative data.

Findings
Themes identified were organised using the Person-Environment-Occupation model. Participants reported systemic changes to previous levels of physical, cognitive and affective functioning, resulting in significant occupational disruption and poor well-being. Occupational prioritisation was followed by a loss of occupations starting with leisure, then productivity and eventually self-care. Environmental barriers to participation included stigma and misunderstanding of ME/CFS, financial hardship, lack of appropriate health services and strains on personal support networks and relationships.

Conclusion
Changes to occupational performance following the onset of ME/CFS caused significant occupational disruption and resulted in limited participation which narrowed over time. There is a clear role for occupational therapy to intervene early to prevent significant negative impacts on occupational participation for people with ME/CFS.

Link (British Journal of Occupational Therapy) [Paywall]
 
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forestglip said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood, highly stigmatised health condition that has widespread impacts on the individual. Currently, there is limited understanding of the ME/CFS experience from an occupational perspective within Australia. This study aimed to explore the lived experience of ME/CFS and subsequent disruption to occupational participation for adults living in Australia.
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Totally missing out the responsibility of the people who caused the stigmatisation in the first place and then stigmatising it with their own paper .
 
The paper said:
Environmental barriers to participation included stigma and misunderstanding of ME/CFS, financial hardship, lack of appropriate health services and strains on personal support networks and relationships.
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None of those are barriers, they are consequences. Of illness, leading to disability. Remove the cause, and you remove the consequences. Leave the cause, and the consequences remain. Addressing the consequences without addressing the cause is pointless. This is not complicated.

Yet again, the process of trying to turn a simple but hard problem into one that is complex but easy. Nothing works like that, it completely ignores not only the root cause of the occupational limitations, but also the root cause of the blatant stigma and discrimination: medicine itself, and its endless obsession with psychosomatic models leading to describing illness without ever using anything relating to actual illness, or attributing the consequences as independent causes on their owns. They can call those barriers if they want, the idea is the same, and it's operationalized exactly this way.
 
This paper is from 2022. Some quotes as paywalled —

Common themes that resonated with all participants included the need to modify and reduce participation and the loss of valued occupations. Participants described ways they tried to avoid the inevitable crash that came after exerting too much energy due to post-exertional malaise.
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Understanding the lived experience is a crucial first step to understanding the full occupational impacts of ME/CFS. Within Australia, there is limited research that explores the experience of living with ME/CFS from an occupational perspective, and the potential role of occupational therapy with this condition is not yet recognised.
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another UK study found people with ME/CFS had difficulty in planning and managing basic daily activities. This demonstrates how over time, without intervention, people with ME/CFS are likely to gradually be forced to reduce their participation to the point where they engage in very few valued occupations with significant consequences for their mental health and well-being.
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a systematic review of mostly international articles found that people with ME/CFS were not receiving enough support from health professionals due to misconceptions surrounding the condition. A recent study also found people with ME/CFS experienced poor interactions with health professionals due to stigma and negative attitudes
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Whilst the participants identified strategies to manage their illness, this was often late in their ME/CFS journey and only after significant loss of meaningful life roles.
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Occupational therapists are uniquely positioned to provide person-centred assessment and intervention for people with ME/CFS in order to minimise occupational deprivation across each of the three PEO [Person-Environment-Occupation] domains. As an ‘invisible illness’ of unknown pathophysiology, ME/CFS has significant implications for the person, and occupational therapists are trained to assess and minimise the spiritual, physical, cognitive and psychological consequences of health conditions and disability on occupational performance. They can also make contributions to minimise the process whereby valued occupations and roles are modified and then prioritised for survival. Assessment and intervention by occupational therapists early in the course of the condition could also reduce environmental barriers and increase facilitators to minimise the impact of the shrinking physical and social environment which people with ME/CFS experience.
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Occupational therapists can also be advocates for people with ME/CFS given their understanding of long-term health conditions and disability and the need for formal acknowledgement of the health burden for individuals, families and society. Without appropriate formal supports such as trained health professionals and access to the NDIS, there is significant risk for people with ME/CFS in Australia. Early intervention by occupational therapists could potentially decrease both the health burden of ME/CFS for the individual outcomes but also larger widespread social and economic outcomes. All of these environmental impacts are only partially ameliorated for those people who are fortunate enough to retain supportive relationships or who find these in alternative ways such as through the ME/CFS community and who struggle to exert change in their environment by increased understanding of ME/CFS.
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Do you know which study this is referring to, @SNT Gatchaman?
another UK study found people with ME/CFS had difficulty in planning and managing basic daily activities. This demonstrates how over time, without intervention, people with ME/CFS are likely to gradually be forced to reduce their participation to the point where they engage in very few valued occupations with significant consequences for their mental health and well-being.
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This seems to imply pwME become able to do less because we don't know how to plan and manage our activities, not because we are too sick to do what we used to do. It suggests learning to manage activities requires a therapist, and if we fail to keep going with activities it's because we are poor managers.
This argument seems back to front and upside down.
 
Additionally, another UK study found people with ME/CFS had difficulty in planning and managing basic daily activities (Strassheim, 2021). This demonstrates how over time, without intervention, people with ME/CFS are likely to gradually be forced to reduce their participation to the point where they engage in very few valued occupations with significant consequences for their mental health and well-being.
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Strassheim V, Newton JL and Collins T (2021) Experiences of living with severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Healthcare. 9(2): 168: DOI: 10.3390/healthcare9020168
 
SNT Gatchaman said:
This paper is from 2022. Some quotes as paywalled —
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Every time I read attempts by professionals to sum up what patients are telling them, the only takeaway I ever get out of it is that their professional training adds absolutely nothing to the process, is actually a huge net negative. It removes meaning compared to simply letting us speak for ourselves.

It has the exact same consequences as the, usually reversed, joke every skilled profession makes about amateurs trying to fix things on their own, how it takes even more time for them (which they bill, so they don't care) because not only do they have to fix the original problem, they also have to undo the botched attempts at fixing it.

But because of the nature of medical relations, they can never find out about it. They see problems through the lenses of their training, but no one is trained for any of this, to hear things outside of their training and contextualize them based on what we're telling them. So they always end up making everything worse than if they simply let us do the work they're busy not doing.

They hear the words and they understand some of them but when you ask them to put it in their own words it comes out all distorted, and much worse off than even the worst brain-fogged versions we tell them. Because they can only think in terms of what they, as professionals, can do, regardless of whether it even applies, something that they clearly can't tell. They have hammers, they flatten everything that looks like a nail.

It's not necessarily bad, but it's always worse than if we just do it ourselves. Always. Never seen it go the other way around. But there is just no way to communicate that, they just don't hear it, or understand any of what we mean, so things actually get worse over time, like LLMs being fed their own outputs, incoherence only ever breeding more incoherence.
 
I expect that these authors meant well. It is hard to evaluate the paper from the abstract and the quotes (although many readers will only ever read the abstract).

A qualitative study of just five people with ME/CFS is very limited. Perhaps it was done just as a short study for a Masters or something?

abstract said:
Environmental barriers to participation included stigma and misunderstanding of ME/CFS, financial hardship, lack of appropriate health services and strains on personal support networks and relationships.
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The abstract does note that the framework was Person-Environment-Occupation, and so when the authors are talking about environmental barriers, I guess they are not discussing the 'person' barriers which presumably include the very considerable barrier of 'being sick'.

the paper said:
Occupational prioritisation was followed by a loss of occupations starting with leisure, then productivity and eventually self-care.
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I think this is wrong. The losses typically don't follow such a neat pattern. Some aspects of self-care go early. A loss of employment might allow time for a hobby. It's complicated in situations where there is withdrawal of support by family, for example a spouse leaving, leaving the person with ME/CFS to take care of a household alone, and potentially also take care of children. The person can also see the great gaping hole of good ME/CFS advocacy and feel compelled to contribute to improving that. All these things can increase non-employment burdens at precisely the time when there is decreased capacity.

abstract said:
Changes to occupational performance following the onset of ME/CFS caused significant occupational disruption and resulted in limited participation which narrowed over time. There is a clear role for occupational therapy to intervene early to prevent significant negative impacts on occupational participation for people with ME/CFS.
Click to expand...
I think an occupational therapist could help someone early in the person's illness.

With hindsight, I would encourage people to do what they can to cut down on work responsibilities early and substantially, so the person has a better chance of doing what they are contracted to do well. That's important for the wellbeing of the person with ME/CFS. It's also important for maintaining good relationships with the employer and for the reputation of the sick person. It keeps options available further down the track. I reckon, struggling on, trying to do the work you did before (and, as I said, potentially having to pick up new obligations, while foregoing the social and personal care activities that sustain a good life) is unlikely to end well.

If an occupational therapist was able to help a person with ME/CFS understand that, and could help with negotiations with the employer and with obtaining any financial support, then they could make a real difference to some people's ability to remain in the workforce in some way.
 
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Hutan said:
If an occupational therapist was able to help a person with ME/CFS understand that, and could help with negotiations with the employer and with obtaining any financial support, then they could make a real difference to some people's ability to remain in the workforce in some way.
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Isn’t OT based on the belief that «occupation is good for you»? I can see many ways for that to go wrong as well.

But if an OT tries to help maximise the function of pwME/CFS through modifying their environment, I think they can do a lot of good.

And if they understand PEM, they might be suited to understand that avoiding PEM is the only sustainable way to maximise function long term.
 
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