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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and disabling disorder that affects all systems of the body, primarily the brain, muscles and immune system. It is estimated that between 0.4-1% of the population are affected by ME/CFS. People of all ages, ethnicities and socioeconomic backgrounds are affected. Symptoms can range from mild to severe, leaving people housebound or bedbound and with significant disability. It is not a psychiatric disorder or caused by a lack of exercise, contrary to common belief.
ME/CFS is a complex illness and a diagnosis is difficult to make. It may take 3-4 months of consistent symptoms before a GP is able to recognise them and refer to a specialist team. Some people with ME/CFS also have another long-term health condition and it is important that this is recognised so that both conditions can be managed together.
In 2015, the National Academy of Medicine published new diagnostic criteria that require patients to have a substantial reduction in activity over 6 months and have symptoms such as fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment or orthostatic intolerance. These new criteria are more specific than previous criteria and aim to distinguish ME/CFS from other chronic diseases with similar symptoms such as fibromyalgia, major depressive disorder and schizophrenia.
GPs can play an important role in diagnosing ME/CFS by assessing patients for these symptoms and asking appropriate questions. It is important that a patient keeps a detailed record of their symptoms so that GPs can see patterns. A diagnosis can be made based on these records alone or in conjunction with other clinical history, including how the symptoms have developed.
It is a good idea for all ME/CFS patients to have regular contact with their GP. This is particularly useful if they have had a recent infection or are experiencing significant symptom changes. GPs can refer adults to an ME/CFS specialist team who will be able to confirm a diagnosis and develop a care and support plan. These teams should consist of medically trained healthcare professionals from a variety of specialisms including rheumatology, rehabilitation medicine, endocrinology, neurology and immunology as well as clinical or counselling psychologists. They will be able to provide advice on benefits, signposting to support groups and help patients access other sources of assistance such as occupational therapy.