Many people with ME experience a substantial loss of physical and/or cognitive function. On average, they score lower on quality of life surveys than those with other chronic conditions such as multiple sclerosis, stroke, diabetes, heart failure, rheumatoid arthritis and cancer. People with ME can be housebound or bedbound, with one in four needing round the clock care. On their worst days, people with ME score as disabled as those with rheumatoid arthritis, congestive heart failure or lung disease.
Most people with ME are not able to work full or part time and children are often unable to attend school. People with the most severe form of ME are often severely disabled and can be confined to their bed or chair. It can take as long as 10 years for a person with ME to receive a diagnosis. Many are misdiagnosed or told they don’t have ME at all.
ME is a distinct neuromuscular disease characterized by specific symptoms and characteristics, including muscle fatigability (post-exertional muscle weakness) and neurological dysfunction affecting cognition, autonomic nervous system, or sensory function. In the past, ME has been compared to CFS (chronic fatigue syndrome) but a number of studies have shown that ME is a separate clinical entity with distinct underlying biology.
The onset of ME is usually sudden but it can also be gradual, with the symptom relapsing after activity or exertion. It is a relapsing-remitting disorder and a patient’s condition may fluctuate from day to day, week to week or month. Symptoms are triggered by exercise, mental or physical overexertion or stress. ME is a neuroimmune disorder that affects multiple body systems and can involve inflammation.
Although there is no laboratory test for ME, there are consistent biological abnormalities found in research studies. However, due to the lack of funding ME research has been very limited.
While there is no cure for ME, there are things that can be done to help improve symptoms and increase functioning. Affected individuals should talk to their doctors and be aware that there are organisations in their countries which can offer support.