Key points
- The ‘burden’ of a disease – the impact that a health problem has in a population – has been found to be high for ME/CFS in countries such as Australia, US, and Germany. However, less is known about the impact of the disease internationally.
- A team of researchers in Hamburg used scoping review (a study designed to provide an overview of a particular field of research) methodology to answer the following question “What is known about the global health, social and economic burden of ME/CFS?”.
- Although results showed that ME/CFS has high economic impact globally, differences in methodology and definitions of disease burden used between studies included in the review meant that it was not possible for the authors to compare costs between countries, or to provide an overall estimate for the global economic burden of ME/CFS.
- The authors of the paper state that more research is needed to “obtain more accurate estimates of the burden of disease and its consequences”, and highlight that this would require more precise estimates of the number of people who are living with the disease (prevalence) .
Introduction
The ‘burden’ of a disease is the impact that a health problem has in a population; it relates to the losses – and hardships – associated with the disease, alongside quality of life, disability, and death.
Disease burden can be measured in several ways:
- By looking at an individual’s quality of life
- By considering the impact the disease has on wider society by investigating factors such as financial costs (e.g., health care), unemployment rates, and school attendance.
- By using a measure of overall disease burden called ‘disability adjusted life years’ (DALYs); according to the World Health Organisation, one DALY represents the loss of the equivalent of one year of full health.
Although studies have looked at the economic burden of ME/CFS in countries such as Australia, US, and Germany, less is known about the impact of the disease internationally. Therefore, a team of researchers in Hamburg aimed to answer the following:
“What is known about the global health, social and economic burden of ME/CFS?”
What did the researchers do?
The team carried out a scoping review, which is a study designed to provide an overview of a particular field of research. Unlike a systematic review, which answers a specific research question, a scoping review maps existing literature on a broad topic to identify key concepts, types of evidence, and research gaps.
Articles, written in either English or German, relating to the disease burden of ME/CFS were searched for. In this review, the authors defined disease burden as ‘the impact of ME/CFS on populations and encompasses health, social, and economic aspects‘.
The team identified 20 relevant articles published before the 5th August 2025, each of these were considered in detail and the quality of the methods used assessed.
Notably, while this review did not consider the individual impact of ME/CFS, the researchers recommended two other studies which have highlighted the significant negative impact ME/CFS has on quality of life; one by Muirhead and colleagues, and another by Weigel and team.
What did the findings show?
As seen in studies looking at the burden of ME/CFS in individual countries, the review identified that the disease has high economic impact globally, although the studies included in the review were mostly from high income countries.
Various indicators to estimate the burden of ME/CFS were used, most commonly costs associated with the disease, followed by DALYs, employment rates, and school attendance.
Due to differences in methodology and definitions of disease burden, it was not possible for the authors to compare costs between countries, or to provide a pooled estimate for the global economic burden of ME/CFS.
Despite this, the researchers could see that the costs associated with ME/CFS were predominantly ‘indirect,’ resulting through loss of productivity due to high unemployment rates – and lower school attendance and educational achievement – among people with ME/CFS. ‘Direct costs’ were also identified, of which the largest was healthcare utilisation such as diagnostic tests and medication. The researchers emphasised that the predominance of indirect costs relating to ME/CFS highlights the economic burden of the disease, not only to those who live with it, but to wider society.
When considering DALYs and ME/CFS, all evidence came from three studies in the US; two of which were carried out by Professor Leonard Jason and colleagues. Authors of the scoping review explain that DALY estimates are highly dependent on prevalence, life expectancy, and healthcare systems, meaning that DALYs may differ from region to region, and that those for the US may not be applicable to other countries. Despite this, it was clear that existing estimates of DALYs for ME/CFS were higher than those for other diseases, including HIV/AIDS and for MS.
In one of the papers by Prof. Jason, published in 2020, results indicated that not only was the disease burden of ME/CFS double that of HIV/AIDS and over half that of breast cancer, but ME/CFS was more underfunded with respect to burden than any disease according to NIH’s analysis of funding and disease burden. In fact, the authors of the 2020 paper concluded that “To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.”
This was also something noted in the review paper:
“Despite the major economic impact of ME/CFS, research funding is insufficient”
Regrettably, this is not a new finding, and something that ME Research UK has continued to highlight over the years. For example, in our response to the DHSC interim delivery plan on ME/CFS, in which ‘the historic chronic underfunding of ME/CFS research, and disparity in funding compared to other illnesses’ is discussed.
Limitations of the review
- Although the researchers used a detailed search strategy to identify articles, only those published in either German or English were included in the review. This may lead to the exclusion of relevant studies published in other languages.
- Differences between studies included in the review in relation to indicators of disease burden, study methods, and ME/CFS definition meant that making comparisons between findings were difficult, and providing a pooled estimate for the global disease burden of ME/CFS was not possible.
- The definition of disease burden used in this study did not take quality of life – an important aspect for those with ME/CFS – into consideration. Rather, the reader is pointed to other systematic reviews which consider this health-related quality of life in detail.
Conclusions
The research team conclude that their ‘findings indicate that ME/CFS imposes a substantial burden of disease, with productivity losses accounting for the largest proportion of costs, as many individuals with ME/CFS are unable to work’. Although this may not appear to be new knowledge, this is the first review to consider the global disease burden of ME/CFS. Regrettably, due to the differences between studies it was not possible to provide a single estimate for the global disease burden of ME/CFS.
The also researchers noted that the findings they observed were likely to be an underestimation of the true disease burden for ME/CFS due to the high rates of under- and mis- diagnosis. The team state that more research is needed to “obtain more accurate estimates of the burden of disease and its consequences” and highlight that this would require more precise estimates of the number of people who are living with the disease (prevalence).
ME Research UK notes that mis- and under-diagnosis may be disproportionately high in underserved groups such as ethnic minority groups. Additionally, where people belong to more than one underserved group, they may face multiple disadvantages leading to increased disease burden. More research is needed to investigate ME/CFS disease burden in underserved groups – and as the authors of the review point out, in low- and middle- income countries.
