Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex chronic illness. The cause is not known and there is no diagnostic test, cure or FDA-approved drugs. It may be triggered by infection and affects people of all ages, races and socioeconomic backgrounds. It is more common in women than men and tends to strike children and adolescents more often than adults.
The symptoms can vary by person, but the hallmark of ME is post-exertional malaise. This means that any activity will lead to a worsening of the illness’s effects, including fatigue, sore muscles, pain and cognitive dysfunction like memory problems or trouble thinking. It can also lead to a host of other issues such as headaches, tender lymph nodes in the neck and armpits, sleep disturbances and a variety of gastrointestinal issues including bloating, diarrhea or constipation. People with ME can experience a variety of other health conditions called comorbidities which include fibromyalgia (widespread muscle pain and fatigue), POTS/Postural Orthostatic Tachycardia Syndrome (abnormally high heart rate upon standing), Ehler’s Danlos Syndrome and mast cell disorders (hives and allergic reactions).
Most people with ME spend years before getting a correct diagnosis because the disease mimics many other diseases and because the common blood tests used by medical providers don’t show anything out of the ordinary. Many of those with ME are severely ill and need around the clock care or are housebound and bedridden. One out of three children with ME are unable to attend school.
It can be difficult to get the right diagnosis because the illness has a stigma attached to it. Those who are ill face discrimination and even abuse because of their condition. The most severe cases of ME/CFS can make a person too tired to work and unable to live independently. It is also important to note that ME/CFS is not a psychiatric disorder and that it is not caused by a lack of exercise or as some believe, by depression.
The ME/CFS community has been working for years to raise awareness and improve the quality of life for patients, their families and friends. We can’t do it alone, so we need your help. Please join the movement to bring forward the research needed to discover safe and effective treatments that can cure ME/CFS.