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What is M.E.?

What is M.E.?

M.E. stands for Myalgic Encephalomyelitis (pronounced My-al-jik En-sef-a-lo-my-ly-tis).

It is a recognised medical condition that affects 250,000 adults, children and young people in the UK.

M.E. causes a wide range of symptoms, including intense tiredness, aches and pains, and can make it very difficult to concentrate or perform everyday tasks easily. Symptoms can come and go, and will vary from person to person. Some people are only mildly affected; others struggle to manage normal school or working hours and may have to cut back a lot on their social life. A small percentage of people with M.E. have to stay in bed, and aren't able to look after themselves or eat properly.

M.E. is sometimes referred to as Chronic Fatigue Syndrome (CFS, or M.E./CFS). On this website we use the term M.E.

There is no known cause of M.E. as yet, although in children and young people it most commonly follows persistent viral infection. There are no tests (diagnosis is made by excluding everything else), and as yet, there is no medication that you can take specifically for M.E.

However, the good news is that with careful management and appropriate information and support from experienced professionals, young people can significantly improve their lives, even to the point where they are completely better.


How do you know you’ve got M.E.?

There are no medical tests for M.E., which means that diagnosis can take a long time.

Doctors first need to take a careful medical history from you and your family, and find out how the condition is affecting your life. Blood tests are then usually taken to rule out other conditions that have similar symptoms to M.E.

Having a blood test comes back as normal doesn't mean that you don't have M.E. The reason for this is that we haven't yet found anything in the blood that we can use as a marker for M.E.

By following official guidelines, which set out symptoms and patterns that they should look out for, your doctor can make a diagnosis of M.E.

Read more about definitions of M.E. and official guidelines for doctors.


What does it feel like to have M.E.?

M.E. affects different people in different ways, and we can't predict what that will be. There are lots of symptoms, some of which we describe below - but it's important to remember that you might not have all of these, and that you might have different symtoms at different times.

Fatigue

  • Utter exhaustion, often to the point of collapse, totally different from ‘normal' tiredness.
  • Fatigue levels can go up and down during the day, and are different from person to person.
  • At its worst, you might look pale.
  • You may suddenly need to sit or lie down very quickly wherever you are.
  • People with M.E. experience "post-exertional malaise", which is fatigue that is delayed – often by one or two days - after too much activity.

Pain

  • Anywhere in the body but particularly headaches, and intense muscle and joint pain without redness or swelling, especially in the legs.
  • Is often difficult to relieve with standard painkillers.
  • You might also feel skin crawling and pins and needles.

Cognitive (thinking) difficulties

  • You find it hard to remember things.
  • It's easy to get confused or mentally tired - your brain seems to run out of steam.
  • It's hard to concentrate, and you get stuck on words or working things out.
  • You find it hard to plan or think ahead.
  • These symptoms together are commonly called "brain fog."

Other symptoms

  • You may feel too hot or too cold.
  • A recurring sore throat is particularly common in children.
  • You might get dizzy (especially when getting up from sitting or lying down).
  • You might find things are too bright or too loud for you.
  • You could also have sleep problems, feel sick, lose your appetite, find that your stomach and gut is playing up; you may feel moody, and experience panic or anxiousness; and you might find that you're now sensitive to certain foods, medication, alcohol and chemicals.