Symptoms

We can't tell how any one person will be affected by ME/CFS. The number and different types of symptoms can be confusing and alarming, and can change a lot in a short space of time.

The main symptoms are:

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 experience "post-exertional malaise", which is fatigue that is delayed – often by one or two days - after too much activity.
  • Although fatigue is the ‘main' symptom, it isn't always the worst.

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 impairment

  • 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.

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Most common symptoms

With help from the Open University, we carried out a study of 500 children and young people with ME, and found that the most common symptoms they shared were:

Fatigue, headache; neurological disturbance (dizziness, disturbed balance, difficulty with concentration, poor temperature control) sleep disturbance, eye pain, muscle pain, abdominal pain, depression, joint pain, and painful glands.

We asked them to rate their symptoms on a scale of 1 to 10, and from this, we could draw up a list of which were the most severe. Fatigue came out top (no surprise there!) with 14% saying it was the worst. Here's the full list:

Fatigue 14%
Headache 10%
Neurological disturbance 7%
Sleep disturbance 5%
Eye pain 4%
Muscle pain 4%
Abdominal Pain 3%
Depression 2%
Joint pain 2%
Painful glands 1%