Myalgic encephalomyelitis (ME) is also known as chronic fatigue syndrome (CFS). ME is a serious neurological illness which can cause significant problems with physical and mental wellbeing. It affects people of all ages and backgrounds. It can last for a few months to several years, and many people do not recover from ME completely but find that they are able to lead fulfilling lives.
A person with ME feels like their body is a battery which cannot be fully recharged, even after a good night’s sleep. They are often so exhausted they can’t work full or part time and children with ME may be unable to attend school or need around the clock care. People with severe ME may be bedbound and unable to communicate.
People with ME have a range of symptoms including feeling tired when they wake up, difficulty sleeping, waking with headaches or sore joints and muscles. They can have trouble concentrating and remembering things and may feel anxious or depressed. Almost half of those with ME are unable to work and three out of four are housebound or bedbound on their worst days. It can be difficult for health professionals to recognise ME because most people don’t have obvious physical symptoms and the most common blood tests ordered by doctors don’t show anything out of the ordinary.
It is not known what causes ME, but it can be triggered by certain infections. It can be more common in women and people from some ethnic groups are more likely to get it. It can be found in all socioeconomic classes and is a worldwide problem. It is thought that it can be a symptom of other illnesses such as fibromyalgia, postural orthostatic tachycardia (POTS) and Ehlers Danlos Syndrome. It can also occur alongside other neurological conditions such as multiple sclerosis and stroke.
The campaign group #ThereForME is calling for a major change in NHS services for ME patients and other illnesses with a similar impact such as long Covid, which have been linked to ME. They want to see local ME services in every area and regional specialist centres for the most severely ill. They also want to ensure that all patients have access to home visits and social care.
They are also demanding better support for research into ME, including the establishment of a multidisciplinary ME team at every NHS trust, and the creation of an evidence base about what helps and hinders recovery. They also want the NHS to invest in a new generation of doctors who are trained to recognise and treat ME/CFS.
Different organisations use different names for ME/CFS, but the main differences are in how the disease is described and the main symptoms. The most commonly used description is myalgic encephalomyelitis, although the names chronic fatigue syndrome and ME are both valid descriptions. However, the medical profession has agreed to use the name ME and some people with the condition prefer this because it is more accurate and respectful of their experience.