Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex illness that affects many bodily systems. It is a relapsing-remitting disorder that can leave people housebound or bedbound. It is thought that ME/CFS is triggered by a viral or bacterial infection, but the cause has not been identified.
ME/CFS is one of the most disabling conditions that can be diagnosed in adults. It can significantly reduce quality of life, and in some cases, can lead to death. The ME/CFS Advisory Committee of the United States Department of Health and Human Services estimates that over 250,000 people in America are living with this disease, which is more than rheumatoid arthritis, multiple sclerosis or congestive heart failure.
Research is ongoing in order to understand the underlying biological processes that contribute to ME/CFS. It is also important to identify and treat any other conditions that may be contributing to symptoms. Because there are no laboratory tests to diagnose ME/CFS directly, doctors must rely on an in-depth evaluation of a person’s symptoms and medical history to make the diagnosis.
There is no cure for ME/CFS, but there are a number of treatments that can improve symptoms and increase functioning in some patients. The ME/CFS Alliance members page provides information about organisations in different countries that can help people find the right treatment for them.
Symptoms of ME/CFS include fatigue, which can be debilitating; post-exertional malaise (PEM), a worsening of symptoms after physical or mental exertion that would not have caused them to feel ill before ME/CFS; pain; cognitive difficulties – such as trouble finding words or understanding speech; disturbed sleep – often due to hypersomnia; and other symptoms such as eye problems, abdominal pain, headaches and slowed responsiveness. Many people with ME/CFS have a combination of these and other symptoms, which can vary over time.
A personalised care and support plan is essential to manage ME/CFS. It is important that healthcare professionals who have been trained in the management of ME/CFS develop and implement this plan with their patients. It is recommended that they have access to specialist ME/CFS teams that contain medically-trained clinicians from a range of specialisms, including rheumatology, rehabilitation medicine, endocrinology, immunology, neurology and general practice, as well as allied health professionals such as exercise physiologists, occupational therapists, dietitians and clinical or counselling psychologists.
The ME/CFS Alliance is a non-profit organisation that meets the needs of individuals with ME, CFS and FM, and their families and friends worldwide. Its members provide information and resources about the illness, promote awareness, advocate for a scientifically valid approach to its diagnosis, and raise funds for research into ME. The ME/CFS Alliance’s website includes a search tool that allows people to find an organisation in their area.