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

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]

 

But where is the evidence that occupational therapy can prevent the negative impacts of ME/CFS?

 

It’s impressive to manage to ignore the most important barrier - being too sick to be able to work!

 

Totally missing out the responsibility of the people who caused the stigmatisation in the first place and then stigmatising it with their own paper .

 

Exactly.

 

Yes, but aside from that, I'm sure that Ms Lincoln enjoyed the play.

 

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.

 

Oh thanks, it popped up in my new research feed but I should have checked the date.

Edit: I changed to 2021 though because that's what it gives its citation as.

 

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

 

Thread here, Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, 2021, Strassheim et al

 

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.

 

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.