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Prevalence

From the Desk of Dr. Danielle Meadows
Vice President of Research Programs & Operations

Professional headshot of Danielle Meadows smiling at the camera.

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.

The Heart of the Matter

  • Prevalence is the number of people that have a disease currently. Lifetime prevalence is similar, but is a measurement of how many people will ever experience a disease in their lifetime.
  • Based on published research, the lifetime prevalence of ME/CFS is over 279 million people, which is around 1 in 29.
  • OMF’s mission is to drive and fund global collaborative research, giving those hundreds of millions of patients a pathway to care and hope.
  • Read more about OMF’s research on our website.

What is prevalence?

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.

Estimating lifetime prevalence of ME/CFS

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:

  • Published research estimates pre-COVID prevalence of ME/CFS at 0.89% of the population. Globally, that is around 71.2 million people.
  • The lifetime prevalence of Long COVID is estimated to be 409 million people, which is about 5.11% of the population.
  • Research estimates that 51% of Long COVID cases match ME/CFS criteria, which is about 208.6 million people worldwide.
  • Altogether, the lifetime prevalence of ME/CFS is therefore 279,800,000 globally.

The table below summarizes these calculations globally and in three countries where OMF has an entity: the United States, Australia, and Canada.

Table showing estimated ME/CFS lifetime prevalence across the United States, Australia, Canada, and globally, based on pre-COVID ME/CFS and Long COVID matching ME/CFS symptoms.

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.

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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