For this month, I want to step outside the bounds of the research process a little and talk about why we do what we do. A sciency way of showing why we do research on ME/CFS is through measuring disease burden.
There are a number of factors that contribute to understanding disease burden, but a critical piece of that is in how many people it affects. So let’s spend some time acknowledging just how many people are affected by ME/CFS. And if the why wasn’t clear before, hopefully it is after this.
Prevalence is a measurement of how many people are currently experiencing a condition. This differs slightly from lifetime prevalence, which describes how common it is to ever experience a condition. But ultimately, both forms of prevalence are an important component of understanding the burden of a disease on a population.
Calculating an approximate lifetime prevalence of ME/CFS involves combining the results of a few studies that evaluated the prevalence of pre-COVID ME/CFS, the lifetime prevalence of Long COVID, and the proportion of Long COVID cases that match ME/CFS criteria. Through the following steps, we estimate that 1 in 29 people will experience ME/CFS in their lifetime:
The table below summarizes these calculations globally and in three countries where OMF has an entity: the United States, Australia, and Canada.
Calculating prevalence based on pre-COVID ME/CFS and Long COVID matching ME/CFS symptoms likely gives a decent estimate. It’s possible it still doesn’t account for cases of ME/CFS that are misdiagnosed, though, which might come from other diseases that lead to ME/CFS symptoms, non-viral triggers, or other forms of the condition.
With hundreds of millions of individuals facing multisystem diseases like ME/CFS and Long COVID, OMF’s mission is to drive and fund global collaborative research that unlocks disease biology, delivers precise diagnostics, and advances treatments—giving every patient a pathway to care and hope. Read more about the research we do on our website.
Help us reach our goal to welcome 30 new Hope Builders—our monthly donors—by the end of March. Your monthly donation can make a real difference in accelerating research and bringing hope to those affected by these debilitating diseases.
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