Having a serious illness like ME/CFS makes it very hard to live your life as you used to. It can leave you unable to do many of the things that you enjoy, and can have a big impact on your family, friends and work life. It can also mean that you need to change the way that you do things on a long-term basis.
It is believed that about 1 in 4 people who have severe ME will become severely housebound at some point. That can have a major impact on the rest of your life and can affect your ability to access care, support and services.
There is no cure for ME/CFS, but there are a number of interventions and symptom-reduction strategies that can significantly improve your quality of life. You can find out more about these in the “Patient Resources” section.
A lot of research is being carried out to try and find out what causes ME/CFS and how it happens in different people. Research suggests that the disease is due to a combination of neurological and immunological factors, and may involve both genetic and environmental factors. It has also been suggested that certain infections, including herpesviruses and enteroviruses, may be a trigger for ME/CFS.
Many people with ME/CFS have trouble getting diagnosed. This is partly because there is no single diagnostic test for the condition. It is also sometimes misdiagnosed as other illnesses, particularly depression and anxiety. The hallmark symptom of ME/CFS is debilitating fatigue that worsens after physical or mental activity, and does not improve with rest. This is known as post-exertional malaise (PEM).
The symptoms of ME/CFS can include heavy exhaustion, problems with thinking and memory, pain and difficulty in maintaining upright postures (brain fog). There are no specific laboratory tests for ME, but doctors can order tests to rule out other conditions that have similar symptoms.
ME/CFS is an illness that can affect anyone. It can happen at any age, and is more common in women than men.
A diagnosis of ME/CFS is made by ruling out other illnesses that have similar symptoms, and using one of several sets of diagnostic criteria. It is also important to discuss your history of the illness and any changes that you have noticed in your ability to manage your day-to-day activities. Your doctor can advise you about making lifestyle changes, specialist treatments or a combination of both. They can also refer you to a ME/CFS specialist if they think it would be helpful. You may be offered an energy management treatment that teaches you to use your available energy wisely and avoid activities that can make your symptoms worse. You will be asked to monitor your symptoms and keep a diary. You may also be offered a specialist treatment called cognitive behavioral therapy. This teaches you to change the way you think about your symptoms and challenges the beliefs that can hold you back from getting better.