ME – What Causes ME/CFS?

ME is a medical condition that affects the nervous system, causing extreme fatigue, which can last for months or even years. It also causes a range of other symptoms, such as trouble thinking clearly, sleep problems and headaches. Doctors do not understand what causes ME/CFS, but they can suggest treatments that may help.

The best known symptom is post-exertional malaise (PEM), which is a worsening of symptoms following any type of exertion, such as physical activity, cognitive overexertion or emotional stress. PEM can occur up to 24 hours after the triggering event, and it can cause people with ME to lose function.

People with ME are often misdiagnosed and have a hard time getting the help they need. A diagnosis of ME/CFS must be based on in-depth evaluation by a physician, including ruling out other conditions that can cause similar symptoms. There is no laboratory test for ME, so doctors need to rely on clinical assessment and evidence of a person’s symptoms over a long period of time.

Research is ongoing into the causes of ME, and there is growing evidence that certain infections may trigger it. These include glandular fever and Epstein-Barr virus (EBV). Vaccines, herpes simplex and varicella (the virus that causes chickenpox and shingles), hepatitis A, B or C infection, gastroenteritis and Ross River virus in Australia are also sometimes linked to ME.

ME is a relapsing-remitting illness, and it can be hard to know how severe your symptoms are from day to day or week to week. Some people with ME have mild symptoms and can work full-time with accommodations, while others are bedbound.

In the past, some healthcare providers recommended cognitive behavior therapy and graded exercise therapy for ME/CFS. However, it is now well understood that these recommendations were based on flawed studies and have caused more harm than good for many patients. People with ME are not lazy or out of shape and should not be made to feel afraid of exercise.

There are organizations that can provide support for you and your family if you think you might have ME/CFS or another illness.

The Massachusetts ME & FM Association is a 501(c)3 nonprofit organization that meets the needs of people with ME (Myalgic Encephalomyelitis), CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) or FM (Fibromyalgia), their families and friends. Their website has information about these conditions and links to resources, including a list of support groups in the area.

The Solve ME/CFS Initiative aims to grow and mobilize a global community of patients to be strong, effective advocates for health equality for ME. They strive to accelerate safe and effective treatment options, raise public awareness, and engage the ME/CFS community in research. The website includes a fact sheet and video with more information. You can also join their Facebook page or follow them on Twitter. They have a petition to sign to call on Congress and the Trump Administration to fully fund ME/CFS research, including a request for an interagency working group.