ME is a complex, neuroimmunological illness which profoundly limits patients’ health and wellbeing. It is triggered by an infection, often viral. It can appear suddenly or develop more gradually. It is not well understood and there are no tests or cures. It affects people from all ages and backgrounds. It is twice as common in women as in men. It may be triggered by a number of factors, including a virus, surgery, trauma, hormonal shifts (pregnancy, menopause) and traumatic events.
GPs are able to diagnose ME/CFS with an accurate history and clinical examination. It is important for patients to work closely with their doctors, documenting and communicating their symptoms accurately. Patients with ME/CFS can find it helpful to keep a diary of their symptoms and use the resources available on the Action for ME website.
A key symptom of ME is post-exertional malaise, which is a worsening of symptoms following physical or mental activity. This can last for weeks or longer. ME/CFS can also be accompanied by other symptoms, such as trouble concentrating, unrefreshing sleep, pain, periods of bloating and constipation and problems regulating body temperature. It is important to recognise and treat these other conditions, known as comorbidities, as they can cause additional symptoms or limit patients’ ability to participate in daily activities.
Research is ongoing to explore the causes of ME/CFS, which is believed to be an autoimmune disease. Studies are looking at potential triggers, such as infections and hormones. One international study, Decode ME, aims to discover whether there is a genetic cause of the illness by testing thousands of individual DNA samples.
Research is needed to develop safe and effective treatments for ME. Until this happens, patients and their families need support to be able to live the best lives they can and to help manage their symptoms. It is crucial that the UK government, healthcare professionals and wider society understands ME/CFS better so that they can provide appropriate support for patients.