What is Myalgic Encephalomyelitis?


If you were forced to choose one word to describe yourself, what would it be? What would your family and friends say is the biggest flaw in your personality? How do you make people feel most comfortable around you? These are just a few of the questions that the “Who Am I?” game uses to get to know someone better. The game can be customized to suit a particular theme or group of people, and the questions can range from serious to silly. The key is to keep the questions as short and straightforward as possible, so that the answer is easy for people to understand. If you use too many complex words, it’ll make the game more difficult for people to guess correctly and can be frustrating for everyone involved.

For example, if you’re playing with an ME support group and you ask a question that involves ME or CFS, it’s best to keep it simple. “ME” and “CFS” are shorthand for myalgic encephalomyelitis, an illness that is not the same as simply being tired or having a cold. The fatigue of ME is debilitating and often unrelenting, unlike the normal tiredness that comes from a good night’s sleep or after exercise. It is also not relieved by rest, and has more in common with the kind of exhaustion that happens with the flu or mononucleosis.

There is no diagnostic test for ME and it may take years to be properly diagnosed. During that time, many people are misdiagnosed with other diseases or told they don’t have ME at all. Some people are very severely affected and need around the clock care.

People with ME are unable to work full or part time, and children are often unable to attend school. They often need help managing daily tasks such as bathing, eating, and getting dressed. They can have trouble concentrating and remembering things, and may struggle to interact with others.

While there is no cure for ME, there are treatments that can be used to reduce symptoms and improve function. These include the practice of pacing, where activity is tailored to a person’s limited energy levels; exercise; sleep aids and medications; antidepressants; pain medications; and gastrointestinal treatments such as GI motility drugs and antacids. Many people with ME have comorbidities, such as fibromyalgia (widespread muscle pain), postural orthostatic tachycardia syndrome (abnormally fast heart rate upon standing), irritable bowel syndrome and gastroparesis, Ehler’s Danlos Syndrome (hyperextensibility) and mast cell disorders (hives and allergic issues). All of these conditions need to be considered when diagnosing and treating ME. They can make ME worse or cause new symptoms if they’re not treated. This can make ME a very disfiguring and difficult illness to live with. Educating people about ME and supporting them to learn how to best manage their symptoms can help to increase awareness and improve diagnosis and treatment. Affected individuals should be encouraged to advocate for themselves, and to join support groups to connect with others and share resources.