ME/CFS can have a profoundly negative impact on patients and it is often misunderstood. This can lead to people experiencing disbelief and discrimination from family, friends, health and social care professionals and even employers. Action for ME can help signpost to local support groups that provide peer support, information and advice.
Myalgic Encephalomyelitis (ME), sometimes known as chronic fatigue syndrome (CFS) and also called Systemic Exertion Intolerance Disease (SEID), is a complex, neuroimmune illness. It is not a psychiatric disorder nor is it caused by lack of exercise, contrary to popular belief. There is no cure or diagnostic test and the cause of ME remains unknown.
People with ME can have many different symptoms including a range of physical problems, such as headaches and muscle pain; and psychological and cognitive issues, such as difficulty thinking or remembering (brain fog). The hallmark symptom is post-exertional malaise, which means that activity – either mental or physical – makes a patient feel worse rather than better. It can take days for a person to recover from even the most mild activities and can be made worse by sleep problems, medication and other factors such as gastroparesis or irritable bowel syndrome.
Some people are very severely affected by ME and may be housebound. As a result, accessing healthcare can be difficult. Campaigners are calling for NHS reforms to ensure that people with ME and severe ME/CFS are able to receive adequate care, support and treatment. These changes are necessary because ME is a disabling condition that limits the health and well-being of patients.
Sadly, ME is still poorly understood and is underfunded. As a result, many people with ME/CFS are not diagnosed and can spend years waiting for a correct diagnosis. It is estimated that up to 90 percent of those with ME are not diagnosed or misdiagnosed, and that around one in three do not get the right care.
In order to diagnose ME, a doctor must consider all the symptoms and rule out other conditions that might be causing them. In the UK, there is no specific test for ME but GPs can assess patients with the following criteria:
In addition to their ME/CFS, people with ME often have other illnesses, such as fibromyalgia or Ehler’s Danlos Syndrome. These comorbidities can cause additional problems such as fibromyalgia-related widespread muscle pain, unrefreshing sleep and orthostatic intolerance (increased heart rate upon standing). It is important for healthcare providers to recognise these comorbidities and to treat them if they are present. There are also strategies that can help to reduce ME/CFS symptoms, such as medication and pacing, and cognitive behavioural therapy.