Range of symptoms
Everyone who experiences M.E. has a different pattern of illness, and symptoms and severity can fluctuate and change over time.
M.E. is not "feeling tired."
The 2021 NICE guideline for M.E. for health professionals in England and Wales instead talks about "debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest."
While it’s important to find out more about the range of symptoms experienced by different people with M.E. – it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.
Post-exertional malaise
Simple physical or mental activities, or combinations of activities, can leave people with M.E. feeling utterly debilitated. They can also experience an increase in other symptoms. The impact of this may be felt straightaway but it can typically take a day or two to kick in, and is not significantly improved by resting. This is a key feature of the way M.E. affects people, and is known as post-exertional malaise (PEM), sometimes called ‘payback’.
The 2021 NICE guideline for M.E. says PEM relates to the "the worsening of symptoms which:
- is often delayed in onset by hours or days
- is disproportionate to the activity
- has a prolonged recovery time that may last hours, days, weeks or longer."
Watch films about post-exertional malaise on the Dialogues for M.E./CFS website, with contributions from people with M.E. and health professionals.
Other symptoms
While it’s important to find out more about the range of symptoms experienced by different people with M.E. – it is also important to know that people with M.E. may only experience a few of them and at varying levels of severity. Always get new symptoms checked by your doctor, as they may be unrelated to M.E. Women often find that symptoms worsen at different times in their menstrual cycle.
Along with debilitating fatigue and post-exertional malaise, people with M.E. may experience the following symptoms.
Feeling generally unwell, such as:
- Having flu-like symptoms (often called “general malaise” by doctors)
- Recurrent sore throat, with or without swollen glands.
Sleep disturbance, including:
- unrefreshing sleep
- sleep reversal,
Pain, such as:
- aching muscles or joints
- nerve pains or pins and needles
- headache or migraine
- twitching muscles or cramps
- abdominal pain (stomach or bowel problems)
- chest pain
- back pain.
If pain, especially muscle pain, is more of a problem than fatigue, fibromyalgia may be an issue.
Cognitive difficulties, sometimes collectively called "brain fog" such as:
- memory problems
- difficulty speaking
- issues with word finding
- difficulty concentrating.
Problems with the nervous system, such as:
- poor temperature control
- dizziness on standing or sitting up
- orthostatic intolerance (symptoms when standing upright which are relieved when reclining)
- hyper-sensitivity to light and sound
- sweating
- loss of balance
- poor circulation.
Digestive problems, such as:
- nausea
- loss of appetite
- indigestion
- excessive wind/bloating
- cramps
- alternating diarrhoea and constipation
- Irritable Bowel Syndrome.
Intolerance and increased sensitivity to:
- bright lights
- noise
- odours
- some foods (for example dairy or wheat)
- some medications
- alcohol.
Frustration, anxiety, low mood and depression are sometimes experienced by people with M.E. as a consequence of having to cope with the impact of the condition and its symptoms. This does not mean that M.E. is a mental health condition, and it should not be treated as such.
Watch films about symptoms on the Dialogues for ME/CFS website, with contributions from people with M.E. and health professionals.
I am feeling worse than usual: is this normal?
During your illness you may experience periods of better health or well-being, but there may also be times when your health deteriorates.
Having a relapse or setback is not uncommon at some stage.
Relapses can be mild or severe and can happen for many reasons, but often because of trying to do too much. You will need to make changes in your daily routine to manage any setbacks. Most importantly, you need to understand what is happening and to have a plan of what to do.
Don’t be disheartened by delays in your progress. Some people say that they experience relapses throughout their recovery but that over time they get shorter or less severe through learning ways to manage them better.
Just as a small step forward in your health doesn’t guarantee that you will immediately get better, a relapse doesn’t have to mean that the course of your illness is on a downward curve.
