Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) is a condition that causes a lot of physical symptoms, including severe tiredness and difficulty with thinking. Doctors do not yet understand what causes ME, so it may be difficult to diagnose and can vary in severity from person to person. ME is a neurological illness and can impact children, adolescents and adults. It is estimated that one million Americans have ME and it affects people of all ages, races and socioeconomic backgrounds. It is more common in women than men and can have a greater effect on those living below the poverty line.
ME is a chronic relapsing disease and it can be triggered by a wide range of infections. Viruses that have been associated with ME include glandular fever, Epstein-Barr virus, herpes viruses (including herpes simplex and herpes zoster), rubella, enteroviruses, Ross River virus and many more. There is also evidence that it can be triggered by emotional stress or trauma. It is not uncommon for ME to co-exist with other conditions such as fibromyalgia, PTSD, rheumatoid arthritis and depression.
Unlike other diseases, there is no single test for ME. It can take years to get a diagnosis and it is often misdiagnosed or missed altogether. People with ME are more likely to be women than men and can be of any racial or ethnic background. It is a complex disorder with symptoms affecting multiple body systems and is characterized by relapsing-remitting episodes. ME can be mild to severe and it is important to find a medical provider who will take the time to understand the illness and listen to the patient.
Although there is no cure, there are strategies to help reduce the severity of ME/CFS. These include pacing, which involves matching levels of activity to available energy; resting when possible; using medications to aid in sleep; pain relief; and reducing stress. Health care providers can also assist in applying for disability and obtaining assistive devices like wheelchairs and accommodations in the workplace or school.
ME can be very challenging to live with. Many people with ME can’t work full or even part-time, and up to a quarter are housebound or bed bound on their worst days. This can have a major impact on family, work and social life. Support from friends and family, and a good medical team can make all the difference. Some people have found it helpful to participate in ME advocacy groups. There are several ME/CFS organizations around the country and the world. The National Institutes of Health recently announced new collaborative research centers that will speed up the investigation of ME. These links provide more information and can connect patients with health care professionals who specialize in ME/CFS. This site is designed to serve as a resource for those living with ME/CFS, their loved ones and their healthcare providers. We hope you find it useful.