ME (myalgic encephalomyelitis) is an illness with complex symptoms, which affect different parts of the body and mind. It can cause a range of problems, such as cognitive impairment, sleep difficulties and muscle pain. People with ME can be very ill and some can become housebound or bedbound for years. The illness is a relapsing-remitting one and symptoms can change from day to day, week to week and month to month.
Many people with ME have other illnesses, known as comorbidities, such as fibromyalgia (widespread muscle pain), postural orthostatic tachycardia syndrome (POTS, which means that your heart rate goes up when you stand up) and gastroparesis (diarrhea and constipation). Having these comorbidities may affect how severely ME makes you feel and how long your illness lasts.
People with ME can also experience problems relating to their mood, such as depression and anxiety, and they often have poor immune systems. In some cases, the illness can be triggered by infections or by stress, such as after a car accident, surgery, chemotherapy, radiotherapy or pregnancy. Some people with ME can also be triggered by certain immunizations, including the chicken pox vaccination.
Researchers are currently examining ME at the biological level to understand what causes it. They are looking at the brain’s own inflammatory and immune processes at a very detailed level. They are testing whether inflammation of the brain itself is part of what causes ME and whether it can be treated by medicines.
In the meantime, the NHS is improving services for patients with ME. GPs are better trained to recognise the illness, and there is now a national helpline for people who are ill or worried about themselves, run by the charity ME Action. The charity also provides advice and support to families of children with ME, who face a lot of prejudice and discrimination.
A campaign by a doctor and patients called #ThereForME is calling for major reform of the NHS’s approach to ME. The campaigners say there needs to be local specialist services that can see new patients, and regional centres that can take on the most severe cases. They are also calling for home visits and access to social care for those who cannot go out. The campaigners are also highlighting the link between ME and long Covid, which has been linked to hundreds of deaths in the UK. The government says it is committed to transforming the way the NHS provides care for ME and other long-term conditions, and is reviewing funding for ME patients. But it is not yet clear when these changes will be in place. In the meantime, the ME charities are raising funds and trying to educate people about the illness. They are also helping people apply for disability benefits and assisting them with getting workplace and school accommodation.