Trial Report The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia, 2023, Zhao

https://www.publish.csiro.au/AH/justaccepted/AH23106

Just Accepted
This article has been peer reviewed and accepted for publication. It is in production and has not been edited, so may differ from the final published form.

The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia
Ting Zhao, Ingrid Cox , Hasnat Ahmed, Julie Campbell, MArtin Hensher, Andrew Palmer, Ryan Kelly, Melissa Rogerson, Karen Wills, Barbara de Graaff

Abstract

Objective

Estimate costs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to patients, government, and Australian society.

Methods

Australian ME/CFS patients and their carers were recruited using convenience sampling.

Patients completed an online retrospective cost diary, providing ME/CFS-related direct medical, non-medical and indirect costs. Informal care costs were collected directly from carers.

Data from the Pharmaceutical Benefits Scheme and Medicare Benefits Schedule were linked to participant survey data.

Annual per/patient and total societal costs were estimated, and broken down by category, and presented in 2021AUD.

Factors associated with higher costs were investigated using generalized linear models.

Results

175 patients (mean/SD age of 49/14 years, 79.4% female) completed the cost diary.

Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09billion, with average annual total costs of $63,400/patient.

Three-quarters of these costs were due to indirect costs ($46,731).

Disability severity was the key factor associated with higher costs, particularly for indirect costs (being 2.27-fold higher for severe disability than no/mild disability).

Conclusions

ME/CFS poses a significant economic burden in Australia, owing mainly to high indirect and informal care costs.

AH23106 Accepted 07 November 2023

 

Sounds interesting. Anyone knows how to get the full version of the paper?

 

Ultimately, this seems to be the main reason why medicine is indifferent to those costs. They don't see them, they are mostly indirect. There is still a significant cost burden behind the need to go to several doctors, do several rounds of tests, and so on, but most of the costs come from the fact that we are disabled, and those costs are invisible to healthcare systems, most of them are even externalities (costs hidden to everyone, whose effect is diffuse).

So their only response is to do even less, which aims to reduce the direct costs they bear, even though it doesn't, essentially causing an endless spiral. The psychosomatic approach is even worse, as those costs usually happen after the costly rounds of pointless help-seeking, so they actually increase overall direct healthcare costs while also increasing the indirect ones, by making the disability burden higher than it should, and perpetuating it endlessly. They effectively maximize all the losses, to themselves, to us, and to society in general.

It's hard to find a worse lose-lose-lose proposition, where every single person and institution in the loop loses out the maximum amount, and the patients suffer the most. You would pretty much have to do obviously absurd things like paying people to build structures, then pay other people to destroy them, dangerously so that many injure themselves in the process, to achieve similar levels of foolish outcomes.

But, hey, it's only been several decades of that. Surely at some point they'll find the right magical words/narratives to make all of this go away. No doubt here.

 

Here is a link to the full paper but unfortunately it is behind a pay wall
https://www.publish.csiro.au/ah/AH23106

 

Whatever happened to "Opportunity cost is the highest valued opportunity lost"?

I'd hope to see a stab at that in any meaningful estimate. The lost potential never realized.

 

I’ve seen that mentioned in at least one form before: ill-health leading to lower educational attainment leading to lower income and the like. Unfortunately it was a CDC CFS study that used the so-called empiric criteria for CFS (Reeves et al., 2005) which gave a prevalence of 2.54%.