ME – A Complex Chronic Illness That Affects All Body Systems

ME is a complex chronic illness that affects all body systems. It is triggered by infection, is not reversible and causes permanent impairment of function and quality of life. It can be mild, moderate or severe. People with ME score as more disabled on quality of life surveys than those with cancer, multiple sclerosis, heart failure and stroke.

ME can affect men and women of all ages and races. It is more common in adults under 50 and is more often diagnosed in white persons than in other racial and ethnic groups. It costs the U.S. economy $17 to $24 billion a year in lost wages and medical bills. It is the sixth leading cause of disability in the world.

People who have ME/CFS often experience extreme fatigue, and symptoms that can be as simple as trouble sleeping at night or needing to rest during the day or as complex as difficulty concentrating, unrefreshing sleep, pain, dizziness, fainting, periods of bloating and constipation and trouble regulating temperature. It is thought that ME/CFS may be a result of a viral or bacterial infection and that there is no one cause. It is also a condition that is frequently misdiagnosed or relegated to the back burner, with many patients not getting the support and help they need.

Currently, there is no laboratory test that can diagnose ME. Diagnosis is most commonly made by excluding other conditions that could cause similar symptoms and by using one of several sets of diagnostic criteria. People with ME often have a very limited social life and have to make major lifestyle changes to cope with their disease.

Some people with ME/CFS experience a flare-up (post-exertional malaise) following physical, cognitive or emotional overexertion. This can cause a global worsening of symptoms, often occurring 24 hours after the triggering event. This flare-up can be a hallmark of the illness and the basis for a diagnosis.

Research has shown that ME/CFS is a neurological disease and that people with ME have biological abnormalities that can be found in the brain, spinal cord, muscle tissue and other parts of the body. However, due to lack of awareness and funding, ME/CFS is rarely recognized or treated as a serious health problem. The MEAction movement is committed to growing and mobilizing an international community of ME/CFS patients and allies to become strong, effective advocates for health equality for ME/CFS and related conditions. Solve ME/CFS is proud to be part of this international network and to support the development of an aggressive expansion of funding for ME/CFS research that will lead to safe, effective treatments.