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There is no one laboratory test for ME/CFS, and a diagnosis must be made by excluding other conditions that cause similar symptoms. Symptoms include debilitating fatigue that worsens after physical or mental exertion, does not improve with rest and cannot be explained by another condition.
ME/CFS affects people of all ages and is two to four times more common in women than in men. It can have a major impact on life and can stop people from working, going to school and participating in family and social life. Up to a quarter of people with ME/CFS are housebound and many experience severe disability. The disease is more disabling than many other serious illnesses, such as multiple sclerosis, heart disease, diabetes and renal failure.
The cause of ME/CFS is unknown but it appears to be triggered by certain infections. These may be viral, such as glandular fever or Epstein-Barr virus (EBV), enteroviruses including Covid-19 and Ross River virus, and bacterial infections such as labyrinthitis and gastrointestinal issues.
It is thought that the illness develops gradually over months or years and can be triggered by an infection or a hormonal shift, such as pregnancy or menopause. It can also be triggered by stress, poor nutrition and environmental factors.
Some patients have a more rapid onset of ME/CFS, possibly due to a traumatic event or a viral infection. It is also possible that some people have genetic predisposition to the illness, but more research is needed.
There is no known cure for ME/CFS, but it is possible to manage the symptoms and improve your quality of life with medication, exercise and support. Some people have good periods of health and do not need to be treated, but the illness is long-term and will always have some effect on a person’s quality of life.
The campaign aims to grow and mobilize an international network of ME/CFS patients and allies as strong, effective advocates, accelerate the discovery of safe and effective treatments for ME/CFS and push for an aggressive expansion of funding to achieve ME/CFS cures. #MEAction is an international network of ME/CFS patients fighting for health equality.