ME is a complex illness with many different symptoms. These include unrefreshing sleep, pain, sensitivity to light and sound and difficulty thinking. Symptoms can come and go and they are often worse after physical or mental activity. A diagnosis of ME is made only after a doctor assesses the patient and rules out other conditions that could cause them. The onset of ME/CFS is typically sudden but in some people it may develop gradually over a few months or years.
There is no known cure for ME but there are ways to help manage it. These include “pacing”, which means carefully matching the level of activity to the amount of energy available; medications for sleep, pain and anxiety; and cognitive behavioural therapy (CBT). Other treatments are being researched.
Many people with ME also have other illnesses, such as fibromyalgia (widespread muscle pain), postural orthostatic tachycardia syndrome (POTS, increased heart rate on standing) and gastroparesis/irritable bowel syndrome (bloating, stomach upsets). These are called comorbidities. These additional diseases make ME/CFS more challenging to diagnose and treat.
ME is not well understood by the public or by health professionals. This can lead to disbelief and discrimination, particularly from friends, family and work colleagues. It can also lead to isolation for patients and their families. It is important to raise awareness of ME and encourage people to talk about their experiences.
Some people with ME can appear to be in good physical condition. This is because they do not have any obvious abnormalities on routine blood tests and they may be able to function reasonably well in their daily lives. However, the underlying problems are still present and they can still be very sick. Most adults with ME are unable to work full time and children are frequently not attending school. Some are bedbound or housebound on their worst days and need to have around the clock care.
ME is a debilitating illness and those affected can be at risk of depression. If you are concerned about this, please call the Emerge Australia info line on 1800 865 321 or visit the Bridges & Pathways website. You can also call the Australian government healthdirect service on 1800 022 222 (known as NURSE-ON-CALL in Victoria) for confidential support and advice. You can also contact a ME/CFS support group, such as Action for ME, which can signpost you to local groups. Healthdirect content is developed and quality assured by the National Health Services Authority (NHSA). The NURSE-ON-CALL phone service operates 24 hours a day, seven days a week. A registered nurse will answer your calls and provide confidential health information and referrals. This service is free of charge to all Australians. You can also find useful information and resources for people with ME/CFS at the NHSA website.