Myalgic encephalomyelitis (ME) or chronic fatigue syndrome is a debilitating, complex neuroimmune disorder affecting many systems of the body. It affects people of all ages, ethnicities and socioeconomic backgrounds, but most are women. It can be very severe and leave people housebound, and is one of the most disabling illnesses in the world.
ME/CFS has been called the ‘silent epidemic’ and is among the most under-funded health conditions in the world. The charity Action for ME estimates that 0.4-1% of the population is affected.
A diagnosis of ME/CFS requires a thorough history and examination as well as ruling out other conditions with similar symptoms. It is a complex illness that can take years to diagnose and is often misdiagnosed. There is no cure and only a small amount of evidence-based treatment.
Currently, it is recommended to manage ME/CFS symptoms with exercise, cognitive behavioural therapy and medicine. There is no known cause and it may be triggered by infection or a flare-up of existing conditions such as long Covid or fibromyalgia. ME/CFS is a multi-system disease and often causes comorbidities such as fibromyalgia, postural orthostatic tachycardia syndrome (POTS, an increase in heart rate upon standing), gastroparesis or irritable bowel syndrome, and secondary depression.
Research is being conducted to better understand the condition. One project, Decode ME, is analysing DNA from patients with ME to look for possible gene variants that may contribute to the disease. It is hoped that this will shed light on the biological processes that lead to ME/CFS, and eventually help researchers develop treatments.
People living with ME/CFS experience a very low quality of life and are more likely to be unemployed or dependent on benefits. They are often stigmatised and ignored, even by family members and friends. Their quality of life is worse than people with HIV/AIDS, chronic obstructive pulmonary disease, end stage renal failure, cancer, and type 2 diabetes.
After the inquest of Maeve Boothby O’Neill, who died from ME at home in 2021 aged 27, campaigners are calling for a change in NHS care. “We want to see a transformation of service provision and to ensure people with ME and other illnesses such as long Covid have access to local specialist services that are clinically led,” says Sonya Chowdhury, chief executive of Action for ME.
There are also a number of support groups for ME/CFS. They can provide useful information and links to other services. You can contact Emerge Australia via their info line or join a support group at Bridges & Pathways. You can also speak to a nurse on the healthdirect helpline by calling 1800 022 222. They can assist you in locating the closest ME/CFS support group or a qualified medical professional. They can also refer you to a specialist for ME/CFS. Calls are free and available 24 hours a day, seven days a week. For more information, visit their website.