Economic Burden of ME/CFS

The publication of a research article into the economic burden of ME/CFS in Australia adds further evidence for the need to invest in ME/CFS research. Irrespecive of the health plight of those affected, the economic cost to a state of an illness which is largely ignored and under-researched alone demands a re-examination of central funders’ attitudes.

The Australian study examined the enteries in a costs diary kept by 175 patients.

Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09 billion, 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).

The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia – Australian Health Review

Figures for the rest of the world are not always easy to find or particularly up-to-date – especially taking into account the effects of the pandemic and likely rise in numbers of those diagnosed globally with ME/CFS.

Prof Lenny Jason in 2020, authored a paper on “Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation” which sought to re-evaluate the Academy of Medicine’s 2015 figures to 2020 levels – the 2015 figures having shown a loss of productivity and high medical costs contributed to a total economic burden of $17 to $24 billion annually in the US. Prof Jason’s study re-assessed this and stated that

We find a rough doubling of the ME/CFS prevalence and economic impact figures in the US, with low-end prevalence coming out to 1.5 million and economic impact having a range of 36–51 billion dollars per year.

However, CDC date brief Dec 2023 gave the US economic cost of ME/CFS as about $18–$51 billion annually.

In Germany, where it is estimated that the prevalence rate means 2 to 4 out of 1,000 people have ME/CFS, evidence to the Bundestag’s Health Committee reported that even before the pandemic, the economic cost of ME/CFS in Germany was estimated at over 7 billion euros a year. It also heard that given that it is anticipated that around 1 to 2 percent of all SARS-CoV-2 infected people (up to 20 percent of all post-COVID sufferers) will meet ME/CFS diagnostic criteria after six months. In figures, this would correspond to 10 million new cases worldwide with up to 300,000 more cases in Germany alone. This, it was submitted, woudl place a considerable strain on the German health and social systems, as well as increasing the estimated burden calulation.

The cost across the EU being estimated at around 40 billion euros per year for the 2 million citizens affected by the disease.

As for the UK, the ‘My Full Reality – Interim Delivery Plan for ME/CFS’ acknowledges that

There are strong economic reasons to address ME/CFS. The 20/20 Health ‘Counting the cost’ report estimated that a weighted minimum cost to the UK of ME/CFS is £3.3 billion, using a cautious assumption of 0.4% prevalence (based on studies calculating costs for April 2014 to March 2015).

Economic Case – My Full Reality – Interim Delivery Plan for ME/CFS

This estimate is based on studies calculating costs for April 2014 to March 2015 – estimates which are outdated by approximately eight years in both prevalence and in cost burden. The ecomomic burden to the UK will now be considerably higher, and rising given the increased numbers of workers inactive in the jobs market due to illness, as well as the young people missing from education, investment now into research of a serious disease with increasing prevalence ought to be viewed as funds well deployed.

Given these figures from across the globe, it cannot be denied that cost of inactivity in realtion to research into the causes and treatment of ME/CFS is one which nations cannot afford.

Even without research spending being increased to reflect historic underfunding, biomedical ME/CFS research has been an egregiously neglected and underrepresented area. Both the Gibson Report (2006) and 2022 All-Party Parliamentary Group (APPG) report on ME called for Government research bodies to ensure that there is a parity of biomedical research funding between ME and other serious long-term conditions. Despite this being highlighted for almost two decades, this call has not yet been addressed. The 2016 ÜberResearch Report into UK research spending found that central research spend per patient for ME/CFS between 2006 and 2015 was just £40 compared with £320 for those with rheumatoid arthritis and £800 for those with multiple sclerosis.

The ecomionic case for investment in ME research is overwhelming but is anyone listening?

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