Journal of IiMER Volume 10 Issue 1 Yorker article. But while she eventually did receive the correct diagnosis, she didn’t get a happy ending. For there is no effective treatment for most victims of the disease, and she remains ill and rarely able to leave her house. As a researcher who surveys CFS patients who volunteer as experimental subjects, I have learned that a long journey to be diagnosed with chronic fatigue syndrome is not unusual. In fact, it is common for individuals with symptoms of CFS to go through multiple years of misdiagnoses, most seeing an average of 4-6 doctors or more, often being told they have a psychiatric disorder, before they find a doctor who has learned enough about CFS to identify the disease. The Centers for Disease Control estimates that fewer than 20% of Americans who have CFS have been diagnosed. Part of the blame for this problem lies in medical training, in which students are told the famous adage: “If you hear hoofbeats, think horses, not zebras.” In other words, if symptoms appear to fit a common disease, then that is the best diagnosis. This idea, when not applied properly, is the origin of many of the errors chronicled by the Mystery Diagnosis TV show. Because though some diseases are less common than others, that doesn’t mean they don’t exist—every rare disease has its victims. Another lesson from the show’s episodes: advocating for yourself can save your life. A striking number of the patients or their caregivers came to a suspected diagnosis or consulted a knowledgeable physician through researching their own symptoms on the web or in the library. June 2016 Standard blood tests are given to someone who arrives complaining of long-lasting fatigue, malaise, and muscle pain. But no abnormalities are seen in such tests of patients with CFS. This leads to the favorite diagnosis of doctors who don’t want to spend time dealing with a patient with unexplained symptoms: depression. Indeed, some CFS patients do become depressed—after being ill for years, losing their jobs, being maligned by friends and family, and repeatedly being told that there is nothing physically wrong with them. But not all CFS patients become depressed, and even those who have psychological problems also have a physical illness of unknown origin. More sophisticated tests, ones more often found in research labs rather than medical testing labs, have revealed immunological and neurological abnormalities in CFS patients. But these are difficult to translate into a simple, easily administered test. Why is a diagnosis important, given that there is no effective treatment for most CFS victims that can restore their prior functioning? Because recommended therapies for misdiagnosed illnesses often can do harm, increasing the severity of CFS. Inappropriate drugs or lifestyle changes—such as types of exercise harmful to people with CFS— can causes patients to become worse, sometimes with long-term detrimental effects. Improved training of physicians about CFS is needed if patients are not going to continue being unwilling characters in real-life episodes of Mystery Diagnosis. A 2010 survey of medical textbooks revealed that only 40% even mentioned CFS. Until recently, little has been done to dispel early and Invest in ME (Charity Nr. 1114035) www.investinme.org Page 44 of 77

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