ME sufferers are not just tired, they’re unable to complete daily tasks, and can sometimes be confined to bed for extended periods. They struggle with headaches, muscle pain, difficulty thinking and memory problems – sometimes called brain fog. They find it hard to maintain relationships, get work and even attend school or college.
The illness can appear suddenly, or develop more slowly over months or years. It appears to be triggered by an infection, typically but not always viral. It is unclear why some people have ME/CFS and others do not.
There is no cure for ME and it is often misdiagnosed and not recorded properly, which can lead to delays in accessing treatment. There is no single test to detect ME/CFS and a diagnosis is only made after other possible known causes of symptoms have been excluded.
The main symptom is extreme fatigue, which persists for six months or more. The NHS’s guidelines state that disabling fatigue must be present for a diagnosis. However, the charity Action for ME has suggested that this criterion may be too low, as the illness can cause many other serious symptoms such as headaches and muscle pain, which are also recorded in medical records.
A lack of understanding about the illness means that patients can experience disbelief, discrimination and social isolation. Despite the physical and emotional impact, it is possible to manage ME/CFS over time, by using a range of coping strategies, such as good sleep hygiene and energy management (also known as ‘pacing’).
People with ME and CFS need to adapt their lives to take into account their illness, and can often struggle financially. This can be especially challenging for young people, who may miss out on opportunities and career progression because of their ME/CFS. The charity ALISS has a guide to entitlements to welfare benefits for ME and CFS sufferers.
ME/CFS can be a debilitating condition, but it is possible for people to live well with it if they are supported by family, friends and community. Support groups and charities can provide information, support and advice on managing ME/CFS, as well as signposting to local services.
Research into ME/CFS is ongoing, with an international team of researchers from organisations around the world working together at the ME/CFS Collaborative Research Centres. This is an open, global network of clinical and basic science laboratories with a shared mission to improve the lives of people affected by ME/CFS.