What is Myalgia Encephalopathy (ME)?

ME is an illness that causes a wide range of symptoms across many body systems. The disease can be triggered by physical, mental or emotional exertion. The hallmark symptom is post-exertional malaise (PEM), a worsening of symptoms that lasts days, weeks or longer after an activity or exposure. ME is a chronic disease with no known cause and no cure. It is a neuroimmune disease and is a complex disorder. Some people who are very sick may be completely housebound or bedbound and others find it difficult to work or study.

Most people who have ME also have one or more other illnesses, such as fibromyalgia (widespread muscle pain and unrefreshing sleep), postural orthostatic tachycardia syndrome (POTS, increased heart rate upon standing) and/or gastroparesis or irritable bowel syndrome (bloating and constipation). This is called comorbidity and should be treated. People with ME can also have depression, secondary immunodeficiency, Ehlers Danlos Syndrome (hyperextensibility), mast cell disorders (hives and allergic issues) and a variety of other conditions.

The medical community is learning more about ME as research continues. In 2015, the National Institutes of Health announced funding to establish three ME/CFS Collaborative Research Centers. OMF supports these centers, along with ME advocacy groups around the world, to accelerate research so precise diagnostic tools and life-changing treatments can be found for this illness as soon as possible.

As with other diseases, it can take years for ME patients to get a correct diagnosis and some are misdiagnosed or told they do not have the condition at all. It is estimated that up to 90 percent of patients with ME have not been diagnosed, are given another disease or were told they are psychiatrically ill.

Researchers have discovered that people with ME have differences in the function of their immune system cells. They have more naive B cells that can be activated by any pathogen and less switched memory B cells, which react to specific infections. This leads to a dysfunctional immune response, which can trigger ME symptoms.

Because the cause of ME has not been identified, treatment focuses on relieving symptoms. Many patients have improved their symptoms with a combination of therapies, including cognitive behavioral therapy and light therapy. Some have had success with antidepressants and supplements. In addition, there are some individuals who have had significant improvements in their ME with an oral medication, called methylfotaxime. Some have even had their symptoms go away entirely.