Symptoms and Diagnosis of ME/CFS

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The symptoms of ME/CFS typically appear abruptly, but can also develop more gradually. The cardinal symptom is post-exertional malaise (PEM), also known as neuroimmune exhaustion, which appears after physical or mental exertion and worsens over time. Other common symptoms include trouble concentrating, unrefreshing sleep, pain and a range of other problems such as periods of bloating and constipation, difficulty regulating body temperature, cognitive problems and orthostatic intolerance.

ME/CFS can affect people of all ages, races and socioeconomic backgrounds. It is more common in women than men. It can begin at any age, but is most likely to start in early adulthood. It can be triggered by infection, surgery, a large hormonal shift (such as pregnancy or menopause) and stressful events.

Some people with ME/CFS have a very mild case and are able to work full or part time, but most are unable to work and up to a quarter are bedbound on their worst days. People with the most severe form of ME may be permanently disabled and require around-the-clock care.

ME is a complex disorder that is not well understood. It is thought that genes and environment both play a role in its development, but scientists have not found the exact triggers. Many researchers are now focusing on the cellular biology of ME, to better understand how it works and what is going wrong in the body to cause it.

The CDC recommends that doctors evaluate ME/CFS patients using an in-depth medical history and thorough clinical examination, including a review of the person’s family medical history. There are no specific laboratory tests for ME/CFS, so it is important for doctors to rule out other illnesses that can cause similar symptoms.

There are a number of different sets of criteria used to diagnose ME/CFS. The most widely used are the Canadian Consensus Criteria, Institute of Medicine and Fukuda criteria. It is important to note that some people with ME prefer that the term CFS be left off of the diagnosis as it stigmatizes the illness.

The Massachusetts CFIDS/ME & FM Association is a nonprofit 501(c)3 founded in 1985 to meet the needs of people with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), or FM (Fibromyalgia), their families and friends. The foundation provides education, advocacy and support for individuals with ME/CFS, their families, and caregivers. It also funds research on ME. The organization also advocates for ME/CFS and other chronic fatigue conditions such as PVFS (post-viral fatigue syndrome) and SEID (systemic exertion intolerance disease). Please check out their website to learn more about their services.