What You Need to Know About Myalgic Encephalomyelitis (ME)


If you’re living with Myalgic Encephalomyelitis, also called chronic fatigue syndrome, you’ve probably experienced a variety of symptoms. The condition causes substantial loss of physical and cognitive function, which may include unrefreshing sleep, post-exertional malaise, and pain on touch. It affects people of all ages, races, and socioeconomic status. Fortunately, there are medications and treatments that can help.

ME is caused by a number of different infectious diseases, including Epstein-Barr virus, hepatitis A and B, glandular fever, and other herpes viruses. People who are severely affected can need around the clock care.

Most patients with ME recover after several weeks to a few months, but recovery can last longer. Patients with severe symptoms are often housebound and require constant care. They may need assistance with daily activities such as eating, bathing, and dressing. Some may be able to take medications that ease pain, boost energy levels, and improve cognition. Other symptoms may be short-term memory problems, difficulty concentrating, and slowed responsiveness.

Adults with the disease tend to experience more severe symptoms than adolescents and children. In addition to having lower health-related quality-of-life scores than people with other chronic conditions, patients typically have poor physical performance, cognitive difficulties, and unrefreshing sleep. Although the cause is still unknown, recent studies have suggested that inflammation of the brain is an important part of the cause.

Research conducted by Stanford Medicine has changed the public’s opinion of the disease. Researchers have determined that ME is a real physical illness that can be diagnosed accurately, thanks to new diagnostic criteria. New diagnostic criteria for ME are post-exertional malaise, unrefreshing sleep, and a substantial impairment in activity.

While there is no known cure for the disorder, researchers are working to find effective therapies. The Open Medicine Foundation is a nonprofit organization focused on life-changing treatments for chronic complex diseases. Currently, the foundation funds research at six ME/CFS Centers of Research and Clinical Excellence (CRCs) worldwide. This is the first time that an open collaborative research approach has been implemented for this disease.

For people who are in treatment, medication and symptomatic treatments are the primary focus. These can help relieve symptoms and help patients avoid crashes. Health care providers can also provide assistance in applying for disability. Assistive devices such as a wheelchair or a walker are also available.

If you or a loved one have been diagnosed with ME, you’ll want to know how to get the most out of treatment. Several organizations have been set up to support people with the disorder. Many are local or national. You can search for information on them at the bottom of this page.

You’ll also want to learn about the symptoms and how to handle them. There are a number of comorbid diseases that are associated with the illness, such as gastroparesis, postural orthostatic tachycardia syndrome, and irritable bowel syndrome. Be sure to check with your health provider if you are experiencing any comorbid conditions. Medications that can help with these symptoms include naltrexone, acetaminophen, and other anti-inflammatory drugs.