Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study, 2021, Cullinan et al

[Tom Kindlon]

Free full text: https://hrbopenresearch.org/articles/3-88

Cullinan J, Ní Chomhraí O, Kindlon T et al. Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study [version 1; peer review: 2 approved]. HRB Open Res 2020, 3:88 (https://doi.org/10.12688/hrbopenres.13181.1)

Research Article

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

John Cullinan, Orla Ní Chomhraí, Tom Kindlon, Leeanne Black, Bláthín Casey

Abstract

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.

Keywords

Myalgic encephalomyelitis, Chronic fatigue syndrome, Economic costs, Thematic analysis

 

[Tom Kindlon]

The similarities between long Covid and chronic fatigue syndrome

Updated / Thursday, 6 May 2021 14:03
https://www.rte.ie/brainstorm/2021/0503/1213462-similarities-long-covid-chronic-fatigue-syndrome/

This article discusses the research among other things. It has its own thread:
https://forums.phoenixrising.me/thr...cfs-website-2021-cullinan.83828/#post-2337154

 

[Tom Kindlon]

Irish Medical Times:
Ground-breaking Irish study highlights economic impact of chronic fatigue syndrome
https://www.imt.ie/news/ground-brea...mpact-of-chronic-fatigue-syndrome-07-05-2021/

 

[Pyrrhus]

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.

Thanks for sharing this, @Tom Kindlon !

 

[Rufous McKinney]

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-

I wonder- does this type of study consider that a PHD could- have their effective career ended by illness like this?

so its not all poor education outcomes, or lower economic wellbeing. Highly effective people doing important things get broken by this illness. And what is THAT cost?

so far I cost our "health service" almost nothing. Thats worked really well for them. Not so much for me. (US private health. insurance, offers no treatments)

 

[Pyrrhus]

I wonder- does this type of study consider that a PHD could- have their effective career ended by illness like this?

I think that's included when they acknowledge "a range of indirect costs".
(Perhaps an understatement!)

Highly effective people doing important things get broken by this illness. And what is THAT cost?

For ex-academics like myself, it's considered "loss of reputation".
(Yes, you can lose your academic reputation just by becoming disabled.)

One of the more dramatic examples of this is Ken Friedman, a tenured doctor at a medical school who was forced to resign simply because his daughter fell ill with ME and he decided to study about ME in his free time:
http://immunedysfunction.org/images/Elephants in the Room As Delivered.pdf

 

[Rufous McKinney]

For ex-academics like myself, it's considered "loss of reputation".
(Yes, you can lose your academic reputation just by becoming disabled.)

In my case, people with my training, who do what i did- they never quit. Even retired, they keep going.

And I can't do it at all, anymore, it seems.

Loss of Reputation: yes- I guess you could call it that.

 

[livinglighter]

For ex-academics like myself, it's considered "loss of reputation".
(Yes, you can lose your academic reputation just by becoming disabled.)

Not to derail the thread too much, but is it because having a disability can incorrectly imply you are less competent?

One of the more dramatic examples of this is Ken Friedman, a tenured doctor at a medical school who was forced to resign simply because his daughter fell ill with ME and he decided to study about ME in his free time:
http://immunedysfunction.org/images/Elephants in the Room As Delivered.pdf

The patient and medical advocate abuse seen with this condition is such an injustice.

 

[Pyrrhus]

Not to derail the thread too much, but is it because having a disability can incorrectly imply you are less competent?

No, it's because it implies you're less productive, which means you're less likely to publish, less likely to secure research grants for your institution, less likely to be invited to collaborations, less likely to get a professorship, less likely to get tenure, etc.

Academia is basically a rat race and if you're too slow, you will be pushed aside and ostracized.

 

[Orla]

Hi everyone, I'm Orla, one of the authors of the study. Myself and John Cullinan are doing a talk on the study on May 25th at 7pm (Ireland/London time). If anyone wants to attend you can register at events@irishmecfs.org

 

[Tom Kindlon]

 

[Tom Kindlon]

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.

https://twitter.com/i/web/status/1397541292914188289