Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a complex, disabling illness that causes extreme fatigue and many other symptoms. It cannot be explained by any other disease and is not improved with rest or sleep. It is estimated that more than one million Americans have ME and the illness affects people of all ages, races, genders and socioeconomic backgrounds.
ME/CFS can be very difficult to diagnose, as there is no single test for it. As a result, it is not uncommon for people to struggle for years to get a correct diagnosis and for as many as 90 percent of those who have ME to be misdiagnosed or told they are not sick at all.
The causes of ME are unknown but research has shown that genetic, central nervous system and immune factors are involved. ME can be triggered by certain infections, including glandular fever and Epstein-Barr virus infectious mononucleosis; herpes viruses such as herpes simplex and varicella zoster; covid-19 virus, Giardiasis and Ross River virus; and other microorganisms like parasites, yeast or protozoa.
Some people who have ME became ill suddenly after a flu-like illness and others gradually got worse over a period of months or years. Research has also found that ME may have a sporadic or epidemic form.
People who have ME often have a combination of illnesses known as comorbidities. This means they have other conditions that occur alongside ME, such as fibromyalgia (widespread muscle pain and unrefreshing sleep), postural orthostatic tachycardia syndrome (POTS, rapid heart rate upon standing up), gastroparesis or irritable bowel syndrome (pain, bloating, constipation and/or diarrhea) and secondary depression, mast cell disorders and Ehler’s Danlos Syndrome (hyperextensibility).
It is not possible to cure ME/CFS, but there are things that can help ease the symptoms and improve quality of life. For example, patients should avoid activities and environments that trigger ME/CFS symptoms as much as possible. They should also exercise at a level they can tolerate and try to do as much as they are able. It is important to get support from family and friends.
Symptoms of ME/CFS include severe fatigue, problems with thinking and memory, post-exertional malaise (PEM), unrefreshing sleep and either cognitive impairment or orthostatic intolerance. Other symptoms can include limb or jaw pain, atypical muscle spasms, headaches and/or abdominal pain.
The symptoms of ME/CFS can vary greatly from person to person, but the most common symptoms include: