When someone asks you who you are, you want to give a full and accurate description of yourself. However, when you have ME/CFS (chronic fatigue syndrome/myalgic encephalomyelitis), that can be challenging.
ME/CFS is a complex disorder with many symptoms and levels of severity. It is a neurological condition that causes debilitating fatigue and is often accompanied by pain in the head, body and muscles. People with ME/CFS can also have other symptoms, such as difficulty concentrating, sore throats and tender lymph nodes in the neck or armpits.
It is thought that ME/CFS may be caused by a combination of factors, including genetics and infection. The illness appears to run in some families and it can be triggered by infections like viral or bacterial illnesses, traumatic events or even surgery.
Unfortunately, ME/CFS is often misdiagnosed. There are no laboratory tests to confirm a diagnosis, so doctors have to make the diagnosis based on in-depth evaluation of a person’s medical history and pattern of symptoms. They must also rule out other diseases that can cause similar symptoms to ME/CFS.
One of the most common errors made by health care professionals is to assume that a person with ME/CFS does not really have the disease. This is because most people with ME/CFS are not ill looking and appear to be healthy to others. They often have normal blood work and can’t explain why they are so sick. Many are unable to work or need around the clock home care. On their worst days, three out of four people with ME are housebound or bedbound.
A key feature of ME/CFS is post-exertional malaise, which means that a person’s symptoms get worse after any type of exertion – physical, cognitive or emotional. The effects can last for 24-48 hours and can include a global increase in their symptoms. This reaction can affect all parts of the body and even lead to a complete collapse.
Many people with ME also have other diseases (comorbidities), such as fibromyalgia (widespread muscle pain and unrefreshing sleep), postural orthostatic tachycardia syndrome (POTS, increased heart rate when you stand up) and gastroparesis/irritable bowel syndrome (bloating and constipation). People with ME/CFS can also experience secondary depression, autoimmune disorders or mast cell disorders (hives and allergic issues).
People who have ME/CFS can’t always be completely free of symptoms, but they can learn to manage their ME/CFS by learning how to better cope with their symptoms, avoiding triggers and planning ahead for activities. Some people with ME/CFS can find some relief by using a variety of treatment options, such as pain medications, exercise, pacing, dietary changes and reducing stress. However, there is no cure for ME/CFS at this time. More research is needed to help find effective treatments. The NIH recently announced new collaborative research centers to accelerate ME/CFS research. If you have ME/CFS, consider contacting these organizations for support and to learn how you can participate in research efforts. This will help improve the quality of life for people with ME/CFS and their families.