Journal of IiMER school full time. For example, a small survey of 25 children with ME in the UK found that only one could attend a full day. Indeed, another study found that ME was responsible for 42% of the medically certified, extended school absences in the UK over a five-year period. While the ‘fatigue’ element in the name emphasizes a major symptom of ME, most patients report that the fatigue is not the same as that experienced by healthy individuals after vigorous physical exercise or inadequate sleep. Instead, the fatigue is described as a profound lack of energy, more akin to the sensation of exhaustion that occurs during a severe case of influenza or mononucleosis. Two additional symptoms were identified by the National Academies of Medicine committee in a 2015 report (http://www. nationalacademies.org/hmd/Reports/2015/MEME. aspx) as hallmarks of the disease: postexertional malaise and unrefreshing sleep. The new diagnostic criteria also require either cognitive impairment or orthostatic intolerance. The latter refers to a surge of symptoms when upright that improves when the patient reclines, likely due to a disturbance in the autonomic nervous system. With regard to cognitive impairment, patients often report ‘brain fog,’ like the impaired mental capacity, poor memory and concentration that healthy individuals experience when they have been awake all night. Most people with ME reach a steady-state level of physical and/or mental activity they can sustain without inducing an ensuing increase in symptoms known as post-exertional malaise. Many are homebound – simple acts such as shopping for groceries can result in worsening of their symptoms. For those who are bedbound, any sort of stimulation, even the mental and physical effort to carry on a conversation, can intensify their symptoms. Many ME patients, whether bedbound or not, are unusually sensitive to light and sound. Bedbound patients often require eyeshades and sound-protecting headphones to cope with those stimuli. Among the most severely ill ME patients (Figure 1), some must be supported at the level of those who are comatose. Some are too impaired to speak and cannot eat nor digest food normally and must be tube fed. Possible roles of the gut microbiome in ME Gastrointestinal disturbance is a symptom often reported by ME patients. This fact has encouraged several investigators to compare the gut microbiome in patients versus controls. Our research group undertook a study of the bacterial gut microbiome by comparing 16S rRNA from faecal samples of 48 ME patients and 39 controls. The 16S rRNA sequence is commonly used to identify bacterial species, as the presence of very variable regions in www.investinme.org Page 26 of 82

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