The Real Experience Of ‘Fatigue’



From ME Research UK.

Fatigue is a disabling consequence of a wide range of chronic diseases, including cancer and multiple sclerosis. It was one also of the symptoms associated with past outbreaks of myalgic encephalomyelitis (ME); in his famous 1959 review of outbreaks Sir Donald Acheson described, “…a period of convalescence prolonged by fatigue, aches and pains, depression and lack of concentration.” And today, fatigue is one of the constellation of symptoms that define ‘Chronic Fatigue Syndrome’, the diagnostic entity which superseded ME in the minds of healthcare professionals from the 1990s onwards.

We all know, however, that the bald word ‘fatigue’ doesn’t begin to describe the experiences of ME/CFS patients. Many of them point out that their major problem is not the fatigue per se (which is shared with perhaps 1–4% of the population), but the conjunction of post-exercise severe fatigue, malaise, pain and other symptoms. We also know that the ‘fatigue’ in ME/CFS patients is more severe than in many other diseases. This was shown in an ME Research UK-funded study by Prof. David Jones and colleagues at Newcastle University who examined data from 600 people across 5 chronically ill disease groups; non-alcoholic fatty liver disease, vasovagal syncope, primary sclerosing cholangitis, primary biliary cirrhosis, and ME/CFS. The most startling finding was that fatigue severity was far higher in the ME/CFS patients than any of the other patient groups (total Fatigue Impact Scale score 102, compared with the primary biliary cirrhosis group which was next highest at 41), and that it impacted on other aspects of life, such as cognitive and social functioning.


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