Myalgic encephalomyelitis, commonly known as ME, CFS or Chronic Fatigue Syndrome is an unpredictable and debilitating condition that can impact all areas of a person’s life. It has no specific diagnostic test, cure or FDA-approved drugs. The cause of ME/CFS is not fully understood, but is often triggered by an infection or trauma. The illness can last a lifetime, leaving people housebound and bedbound and unable to work or study.
Despite the stigma and prejudice, ME/CFS can affect anyone, from all walks of life. The condition is not rare – it’s estimated that between one and four million people in the UK have ME/CFS. People with the most severe form of ME are confined to their homes and need around-the-clock care.
Many people who have ME find it hard to get a diagnosis. The most common blood tests that doctors order don’t show anything out of the ordinary, which means that medical professionals can be unaware of ME or misdiagnose the condition as a mental health issue. This can mean that ME/CFS patients do not receive the necessary treatment, which can worsen their symptoms and make them more difficult to manage.
People with ME/CFS experience a range of symptoms including fatigue, headaches, muscle and joint pain, anxiety, sleep problems, light sensitivities, sensitivity to sound and flashing lights. A hallmark symptom of ME is post-exertional malaise (PEM), a worsening of symptoms after physical, cognitive or emotional exertion that would not have caused them to suffer in the past.
The condition can also present itself suddenly or build up over time. It can appear following an illness, or there may be no obvious trigger at all. In the majority of cases, ME/CFS is triggered by a viral infection. However, in a minority of cases, there is no identifiable virus involved.
While there is no cure for ME, treatments that can help to relieve symptoms include cognitive behavioural therapy; medicines to aid sleep or control pain; and ‘pacing’, which helps to manage how much energy a patient expends in a day. Many people with ME/CFS find that keeping a diary of their symptoms helps to communicate these effectively to healthcare providers.
If you are experiencing any of the symptoms of ME/CFS, contact Emerge Australia info line on 1800 865 321 or join a peer support group at Bridges and Pathways. You can also call the Healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria) for information and referral to local health services. This service is free and available 24 hours a day, seven days a week. Healthdirect content is developed by Australian experts and reviewed by a nurse. Healthdirect is funded by the Australian government.