Myalgic Encephalomyelitis - A Disease Looking for Respect

RDR Staff
Published Online: Tuesday, Mar 05, 2013

Myalgic encephalomyelitis (ME) is a condition with unknown origin and unclear treatment options. Widespread inflammation and multisystemic neuropathology seem to be at the core of its pathophysiology.

ME is also commonly referred to as chronic fatigue syndrome but advocates for the condition prefer the ME nomenclature. Chronic fatigue syndrome has been often misused and/or over-diagnosed in the past so it is currently unclear if ME is a rare condition. A recent prevalence study (Vincent et al 2012)  had the estimated number of patients in the U.S. at around the 200,000 mark but more studies are needed to ascertain its true prevalence.

In this interview with Rare Disease Report, patient - and patient advocate - Charlotte von Salis describes ME and the need for more awareness and funding for this condition.

For more information about this ME, visit


Vincent A, Brimmer DJ, Whipple MO, et al. Prevalence, incidence, and classification of chronic fatigue syndrome in Olmsted Country, Minnesota, as estimated using the Rochester epidemiology project. Mayo Clinic Proc.2012; 87(12):1145-52

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