What is ME/CFS?

ME/CFS is a complex, debilitating illness that causes extreme fatigue and other symptoms that can’t be explained by any other disease. These symptoms worsen after physical or mental effort and don’t improve with rest.

It can affect anyone – even children and adults. It can happen suddenly or gradually over months and years and it may be triggered by a viral or bacterial infection, such as herpesviruses and enteroviruses.

The cause of ME/CFS is not known, but research studies are looking for genetic, central nervous system, immune and metabolic factors that might be involved. Solve ME/CFS is working to support research on the cause of this debilitating disease and to accelerate the discovery of effective treatments.

Why is ME/CFS so difficult to diagnose?

Diagnosing ME/CFS is a challenging task because it is not possible to test for the condition, so doctors must make a diagnosis based on a person’s medical history and the pattern of their symptoms. Other diseases that are similar to ME/CFS must be ruled out before a positive diagnosis can be made.

Why is ME/CFS relapsing-remitting?

ME/CFS is a relapsing-remitting disease, meaning that symptoms often return from one day to the next. Some patients experience a single episode of extreme fatigue that lasts for months or years. Others experience a long period of recurrent symptoms, sometimes for a decade or more.

Does ME/CFS cause recurrent infections?

Although people with ME/CFS do not typically experience recurrent infections, some patients do have recurring episodes of herpesviruses, Epstein-Barr virus and Giardia-caused diarrhea. ME/CFS patients also may have more frequent colds and flu-like illnesses than healthy individuals without the disease.

What are the main symptoms of ME/CFS?

The most common symptom of ME/CFS is extreme fatigue, which is so severe that it significantly reduces the patient’s ability to function. Other symptoms can include sleep disturbances, gastrointestinal (GI) issues and brain fog.

How do I get diagnosed?

The diagnosis of ME/CFS is usually made by a qualified doctor who uses a standard diagnostic tool. In the UK, this is a National Institute for Health and Care Excellence (NICE) guideline. The guideline is based on the pattern of symptoms and excludes other conditions that have similar symptoms.

When you are diagnosed with ME/CFS, your doctor can help you find ways to manage your symptoms and increase your quality of life. Your doctor can recommend medicines, dietary changes and complementary approaches that can help you to feel better.

You should always talk to your doctor before starting new medications or supplements, as ME/CFS can make existing illnesses more serious and increase the risk of drug-related adverse effects. You should also review any other medications or supplements that you have taken recently to ensure they are safe and appropriate for your ME/CFS.

Is ME/CFS a combination of two different diseases?

The two diseases ME and chronic fatigue syndrome (CFS) are recorded separately by the World Health Organisation. However, many healthcare systems, healthcare professionals and researchers use the term “ME/CFS” to describe the same illness.