If you have myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome or CFS, your illness can cause severe physical and mental health problems. It can be hard to get a diagnosis and some people can take years to recover. But it is possible to manage your symptoms and improve your quality of life.
ME affects everyone differently. Some are more able to cope with it than others, but it can still be devastating for many. Many people with ME can’t work or study, and some cannot leave their homes. Some need around the clock care, including feeding and bathing. It is often difficult for doctors to diagnose ME because there is no laboratory test. The illness can be triggered by many things, including infection, surgery, major hormonal changes (such as pregnancy and menopause), or stressful events. It can also be triggered by emotional stressors like bereavement or a relationship breakdown.
There is no cure for ME, but there are ways to help you manage your symptoms. There are medicines you can take to reduce the pain and fatigue, and treatments to help you sleep better and think more clearly. You can also get support from friends and family, or find an ME support group near you.
ME is a complex illness and the name can be confusing, but the most important thing is to remember that it is a real physical condition that causes significant disability. People with ME can be very ill and some need constant home care.
The NHS is calling for urgent reforms to the way ME and other conditions such as long Covid are diagnosed and treated, after a young woman’s death highlighted failings in the system. Campaigners want local specialist services that can offer appointments at short notice, and support patients with more severe symptoms.
A local ME support group may be able to help you find doctors who specialise in ME/CFS. These organisations can give you advice for talking to your GP, and can suggest questions to ask them. They can also provide information on the ME/CFS guidelines that are available.
The CDC’s ME/CFS website has a lot of information for patients and doctors, and a list of organizations that can provide support. It’s very important to get a proper diagnosis for ME, as it can be hard to distinguish from other health problems such as depression and anxiety. A medical professional should ask you about your symptoms and do a thorough physical examination. They should also rule out other diseases that can have similar symptoms, such as rheumatoid arthritis or heart disease. They will also ask you whether any specific activities make your symptoms worse. A common symptom of ME is post-exertional malaise (PEM). This means that after you do something physically or mentally, your symptoms will get worse. This can last for weeks. Then, you will have to rest and do less until your symptoms improve. You can read more about the criteria for diagnosing ME/CFS here.