Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome or ME/CFS, is a serious illness that affects the physical and mental health of people. It is one of the most misunderstood illnesses in the world, with some people spending years waiting to receive a diagnosis and others being wrongly diagnosed with another disease.
People with ME experience a range of symptoms, which can vary in intensity and severity. They can include:
Post-exertional malaise, which is a worsening of symptoms (fatigue, muscle pain, cognitive impairment and/or unrefreshing sleep) after physical, mental or emotional exertion that would not have caused these symptoms before ME/CFS began. This symptom can last hours, days or weeks and is not a result of a lack of exercise. Sensory overload, such as light or sound, can also trigger PEM.
Cognitive difficulties (also known as brain fog). This can include problems finding words, slowed responsiveness, difficulty concentrating or multitasking, short-term memory problems and impaired cognitive flexibility. Pain in the muscles, joints, glands or abdomen without acute redness or swelling. Unrefreshing sleep, which is often characterised by broken or shallow sleeping patterns and waking with an altered or abnormal sleep pattern, or hypersomnia. Unrefreshing sleep can also be accompanied by a lack of energy or fatigue, headaches, vision problems, abdominal pain and/or gastrointestinal issues.
Unlike some other conditions, there is no test for ME/CFS and it can be difficult to diagnose. This can be partly because it may take a long time for someone with ME/CFS to become ill and the symptoms can be quite subtle. Also, some people are able to hide their symptoms at work and at home.
ME is not a psychiatric condition and it is not triggered by a lack of exercise, despite what many people believe. Many people with ME/CFS also have a co-occurring condition such as fibromyalgia (widespread muscle pain) or a sleep disorder.
A number of treatment approaches are suggested for ME/CFS but there is no cure at present. These include pacing, which involves matching activity levels to limited available energy; rest; medication to ease symptoms such as pain and anxiety; and support groups.
ME/CFS can have a significant impact on life, with three out of four people living with the illness being unable to work full or part-time, and some people needing around the clock care. This can have a major impact on the whole family, as well as the person with ME/CFS. This is why it is important that we continue to advocate and campaign for funding for ME/CFS research. This includes the MEAction Campaign, which encourages and empowers an international community of ME/CFS patients and allies to be strong advocates for ME/CFS research to speed up a safe and effective treatment. Click HERE to learn more.