As a long-term, fluctuating disease, ME/CFS can make it difficult to find the right “me”. But with time, people with ME/CFS learn what they are capable of. They discover parts of themselves that they never knew were there, and begin to choose activities in line with their values. They also learn to manage their symptoms and to avoid things that cause a worsening of their symptoms. They develop coping strategies, and may even become experts at certain activities or sports. Some even find their own ways to get the rest they need.
ME/CFS is a complex illness, with no diagnostic test or cure, and it can last for years. It affects every system of the body. The hallmark symptom is post-exertional malaise (PEM), or neuroimmune exhaustion. This is a severe worsening of symptoms after physical, cognitive or emotional exertion that would not have caused a problem in the past. It can also occur after exposure to light or sound, and it can linger days or weeks after the triggering activity.
Some researchers believe that ME/CFS is an autoimmune disorder, or that it’s the result of chronic inflammation in the brain. Others think it’s an infection or virus, or that it’s a combination of factors. Genetics appear to play a role, and people may be predisposed to developing the condition because of a family history of ME/CFS or other conditions. Many people with ME/CFS report that their symptoms were triggered by an infection, such as viral, bacterial or parasitic infections.
People who have ME/CFS can often look healthy and do not have any signs or symptoms of a serious illness, so the disease can be hard for medical professionals to recognize. There are no lab tests to diagnose ME/CFS, so doctors need to evaluate a person’s health history and symptoms, taking into account the fact that many other diseases can cause similar ones. In some cases, the symptoms of ME/CFS are mistaken for depression, or the illness is ignored altogether.
Many people with ME/CFS find that talking with a counselor can help them cope with their condition, deal with limitations at work or school and improve family dynamics. Support groups can be a helpful way to meet other people with ME/CFS, and discuss issues that arise. They are not for everyone, though, and can increase stress or make symptoms worse for some people.
Until researchers find a cure, people with ME/CFS can take steps to manage their symptoms, such as using pacing and other strategies to avoid crashes; managing stress; getting enough sleep; keeping hydrated; and finding ways to reduce pain and inflammation. People can also seek professional support to apply for disability benefits, and obtain accommodations at work or school. Support MEAction and the Open Medicine Foundation’s goal of funding collaborative ME/CFS research so that precise diagnostic tools and life-changing treatments can be found as soon as possible. Click here to donate.