By ME/CFS Skeptic.
In a previous blog, Evelien and I argued that ME/CFS is getting less research funding than illnesses with a comparable prevalence and disability. In this article, we will try to get a better understanding of why ME/CFS gets so little research funding. Many causes have been proposed such as stigma, lack of a biomarker, mischaracterization of ME/CFS as a psychosomatic condition, and so forth.
Our main conclusion is that except for disease burden, it’s quite difficult to identify factors that determine the level of research funding. There aren’t any obvious explanations that stand out. Given the high disease burden of ME/CFS, it remains inexplicable why so little funding has been devoted to research its cause and pathology. The most likely explanation is that there are multiple factors at play and that for each one of these, the odds are stacked against us.
DALY and the Global Burden of Disease Study
Researchers usually compare the level of research funding based on some measure of how impactful a disease is. If one illness is more prevalent or deadlier than another, it makes sense that more funds are devoted to studying its cause and treatment. The term ‘disease burden’ is intended to take these factors into account. There are several measures used to reflect disease burden, but the most popular, and arguably the most accurate one, is DALY.
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