When people ask you to describe yourself, what do you think of? You might immediately think of your hobbies or interests. But when asked to describe yourself in one word, what do you choose? Many people have a hard time answering this question, especially when they have a chronic illness.
ME can be described in a variety of ways, but it is often defined by the following symptoms: severe, debilitating fatigue that does not go away with rest; persistent and unrefreshing sleep; cognitive impairment; orthostatic intolerance (inability to stand up without feeling lightheaded); and/or muscle pain, including fibromyalgia-like tenderness or twitching and spasms. Some people also experience secondary depression, gastrointestinal issues and mast cell disorders.
It can be difficult for doctors to diagnose ME/CFS because there is no laboratory test, and it’s important that other diseases with similar symptoms are ruled out before a diagnosis can be made. The CDC recommends that patients be evaluated by a medical doctor who has been trained to make the diagnosis. However, most ME/CFS patients are not seen by doctors with this training. As a result, people with ME are frequently misdiagnosed or not diagnosed at all. Some people struggle for years to receive a correct diagnosis. The name of the disease has changed over the years, and it is currently listed as myalgic encephalomyelitis or chronic fatigue syndrome. Some people prefer to use the term ME only, while others like to leave out the ‘CFS’ part of the name, as it can be stigmatising.
Most people with ME are not able to work full or part time, and three out of four adults are housebound or bedbound on their worst days. Many people who have ME also require around the clock care from friends and family members. People with ME are not lazy or making it up; they just have a very difficult illness.
While it is possible that ME may be triggered by an infection, it has never been proven to be the case. In some cases, it follows a well-documented infectious illness, such as Epstein-Barr viral infectious mononucleosis or Giardia diarrhea. The relapses of ME can be debilitating and cause significant loss of function over time. Some researchers believe that ME is caused by an abnormal immune response. Other researchers suggest that it is a neurological disorder. There are several theories of what causes ME, and it is still not known if there are any effective treatments. Despite the lack of effective treatment, there are many things that people with ME can do to improve their quality of life, such as joining a support group or finding out what entitlements they may be entitled to. The ME/CFS charities ALISS and Action for ME can provide information on this.