What is Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)?

Myalgic Encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a complex illness where extreme fatigue and other symptoms reduce your ability to function. Symptoms worsen after physical or mental exertion and don’t improve with rest. No one knows what causes ME/CFS and there is no cure.

Often, people with ME/CFS appear to be healthy and tests ordered by their doctors don’t show anything unusual. However, most people with ME/CFS are unable to work full or part time and can’t carry out their normal daily activities. Some are housebound or bedbound and require around the clock care.

ME/CFS affects the brain, spinal cord, muscles and organs. Unlike other conditions that may cause fatigue, ME/CFS is not triggered by exercise, anxiety or depression. Instead, it can be caused by many different things including a viral infection, surgery, dental work, medication or stress.

The National Institutes of Health’s ME/CFS Research Centers announcement is an exciting step forward in developing research into ME/CFS. This will help scientists identify underlying biological mechanisms and develop treatments.

This will also lead to better understanding of the disorder, which in turn will support improved care and outcomes.

The ME Association fully supports the NICE clinical guideline on ME/CFS and is working with the NHS to ensure effective implementation of the recommendations. It aims to make sure that patients are seen by a healthcare professional trained in assessing, diagnosing and managing ME/CFS and that they have access to a specialist ME/CFS team.

Specialist ME/CFS teams should have medically-trained clinicians from a range of specialisms including rheumatology, rehabilitation medicine, endocrinology, neurology, immunology, general practice and infectious diseases. They should also have access to healthcare professionals who are specially trained in ME/CFS such as physiotherapists, occupational therapists, dietitians and clinical or counselling psychologists.

A key symptom of ME/CFS is post-exertional malaise (PEM). PEM is a worsening of symptoms following physical, mental or emotional activity that would not have been difficult to do before the illness began. The intensity and duration of PEM is disproportionate to the level of activity that triggered it and can last for days or weeks.

Treatment is focused on improving symptoms and increasing functioning. There is no single treatment that treats the underlying cause of ME/CFS and, until that happens, treatments are limited. However, there is evidence that pacing and activity modification can improve symptoms and increase functioning in some people with ME/CFS.