Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study, 2020, Cullinan, Kindlon et al

Andy

Andy

Retired committee member
@Tom Kindlon is one of the authors.
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine diagnostic tests and biomarkers are unavailable. There is no evidence on the economic impact of ME/CFS in Ireland.

Methods: Adopting a patient and public involvement approach, we undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland, including how and why they arise. Focus groups were audio-recorded and transcribed verbatim, and we employed thematic analysis following the approach set out in Braun and Clarke (2006).

Results: Themes from the data were: (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs. Patient participants described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments. These were linked to poor prognosis of the illness by participants who, as a result, faced a range of indirect costs, including poorer labour market and education outcomes, and lower economic well-being. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. Informal carer participants described a range of impacts, including time costs, burnout, and impacts on work and study.

Conclusions: The data suggests that ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal carers. These results will inform ongoing research that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness amongst healthcare providers and policymakers.
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Open access, https://hrbopenresearch.org/articles/3-88/v1
 
I imagine that there is also a great number of people with mild CFS who never get diagnosed or who aren't aware of it. The cases who can manage it somehow and try to compensate for it by lifestyle change simply because they believe that they aren't physically fit enough anymore. They would do sports and stop because it makes things worse, then they would try other lifestyle changes like a diet change and this shows some improvement, so they won't ever visit a doctor. Overall, these unreported cases would still reduce productivity in their jobs. Not enough to stand out for an individual (unless you work for a company like Amazon which takes protocol of very single step), but enough to become significant for the productivity of a country that is affected by COVID-19, for example.
 
The Economic Impact of ME.PNG

A recording of the lecture part of our webinar yesterday can now be watched for free at

Thanks very much to all involved in the project, including those who attended the focus groups.

Thanks in particular to Dr John Cullinan and Orla Ní Chomhraí for all the work on their analysis and for giving of their time to speak yesterday. Neither received a salary from the project. Dr Cullinan also didn't have a say PhD student to do most of the work.

The full research paper, "Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study", can be read here: https://hrbopenresearch.org/articles/3-88
Although research papers can often be challenging to read, many more people than usual might find they are able to read the results section without much difficulty. It doesn't really discuss numbers or have much jargon.
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Our new blog post on the HRB Open Research* website:

"It’s time to start listening to people with Myalgic Encephalomyelitis"

https://blog.hrbopenresearch.org/20...erstanding-the-healthcare-barriers-and-costs/

Headings:

- What is ME?

- Controversy around ME

- Our PPI research partnership

- Healthcare barriers & costs

- Implications for long-term effects of COVID-19

*The open access journal of the Health Research Board
 
Tom Kindlon said:
Our new blog post on the HRB Open Research* website:

"It’s time to start listening to people with Myalgic Encephalomyelitis"

https://blog.hrbopenresearch.org/20...erstanding-the-healthcare-barriers-and-costs/

Headings:

- What is ME?

- Controversy around ME

- Our PPI research partnership

- Healthcare barriers & costs

- Implications for long-term effects of COVID-19

*The open access journal of the Health Research Board
Click to expand...

An excellent post, thank you to all involved.
 
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