What is Myalgic Encephalomyelitis (ME) Or CFS?

Myalgic encephalomyelitis is a multi-system illness causing neurological, immunological, gastrointestinal, cardiovascular and endocrine symptoms. It has been called many names over the years but is most widely known as ME or CFS.

ME/CFS is a chronic condition that affects people of all ages, races and socioeconomic backgrounds. It’s more common in women than men, and most people with ME are between 30-60 years old. It can strike suddenly or start gradually over months or even years.

The hallmark symptom of ME is post-exertional malaise, or PEM. This is a worsening of symptoms after physical, mental or emotional exertion that wouldn’t have caused any problems in the past. It can also be triggered by light, sound and cognitive overexertion, and lasts up to 24 hours or more.

Other symptoms of ME include cognitive difficulties, pain, a decreased ability to exercise or work, and sleep disturbances. The severity of ME varies from person to person and from one episode of PEM to the next. Many people have mild ME where they can continue to work full or part time with accommodations; others are bedbound and require around the clock care.

People with ME often do not get proper diagnosis because the cause of ME is still unknown. Diagnosing ME/CFS is complex, and the CDC reports that less than 9-16 percent of ME/CFS patients have been properly diagnosed.

Many doctors don’t recognize ME/CFS or are untrained to recognize the symptoms of the disease. This can make it difficult for those with ME to find medical care. The Massachusetts ME/CFS Association is a non-profit that exists to meet the needs of people with ME, CFIDS and FM (Fybromyalgia), their families and loved ones.

While there is no cure for ME/CFS, treatment can significantly improve quality of life. This includes pacing, which involves matching activity to energy levels; avoiding stimulants like caffeine and nicotine; sleeping aids; and medications for pain and depression.

Despite the challenges, many people with ME find strength in community. Support groups can help with coping skills, finding a job and improving family dynamics. They can also provide information about resources for people with ME/CFS. However, these groups aren’t for everyone and should be approached with caution.

Some people with ME find it helpful to talk with a counselor. Counselors can help with coping and stress management, as well as navigating social and family situations that may be challenging. They can also assist with applying for disability, obtaining assistive devices and getting accommodations at school or work. People with ME/CFS are more likely to experience depression than the general population, and counseling can help treat that as well.