ME is a complex chronic illness known as Myalgic Encephalopathy, and commonly referred to as CFS (Chronic Fatigue Syndrome) and PVFS (Post Viral Fatigue Syndrome). The World Health Organisation have defined it as a neurological illness, and it’s also a disease of the central nervous system. It’s reported to affect all ages, and the onset of the illness may be gradual or sudden. Around 250,000 people in the UK are believed to be affected by the illness, and whilst the cause is not certain, it’s often linked to a viral infection, and sometimes a bacterial infection, operation or accident.
The main symptom of the illness is severe and debilitating fatigue, which is very different to usual tiredness or exhaustion, and is not relieved by rest or sleep. Dysfunctions within the brain cause a number of other symptoms, including problems with sleep, memory and concentration, difficulty regulating body temperature, severe headaches, painful muscles and joints, tender and swollen lymph nodes, sore throat and digestive problems. The symptoms can range in their severity (mild, moderate, severe, very severe) and it can cause a high level of disability, resulting in a person being housebound or bedbound for months or years.
Many people with the illness find that their quality of life drastically changes, and this can be the case for someone with mild ME. During the course of the illness, people are likely to experience issues maintaining friendships and relationships, employment, studies and hobbies. Simple, everyday tasks, whether physical or mental, tend to leave people struggling to function. The difficulties experienced in the illness can be heightened by the opinions of others, mainly the disbelief around the illness, or the view that it’s psychological rather than physical in origin. The controversy surrounding the illness can be extremely difficult to deal with.
At present there is no cure for the illness, and so any treatment focuses on symptom management. “Pacing” is a recommended treatment strategy, and whilst it requires commitment and discipline, it can help people effectively manage the illness. Making a full-recovery is uncommon, yet over time people can return to a good level of functioning. In a very small few cases, someone with severe or very severe ME will remain as such, yet most people will experience fluctuating spells of good and bad health.
There are a number of organisations that provide advice, information and support in ME, including national charities such as the ME Association and Action for ME. There are also blogsites written by ME sufferers themselves, on-line groups and forums, and local support groups.