Everyone who experiences ME has a different pattern of illness, and symptoms and severity can fluctuate and change over time.
ME is not "feeling tired."
The 2021 NICE guideline for ME/CFS 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 ME – it is also important to know that people with ME 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 ME. Women often find that symptoms worsen at different times in their menstrual cycle.
Simple physical or mental activities, or combinations of activities, can leave people with ME 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 ME affects people, and is known as post-exertional malaise (PEM), sometimes called ‘payback’.
The 2021 NICE guideline for ME/CFS says PEM relates to the "the worsening of symptoms which:
Watch films about post-exertional malaise on the Dialogues for ME/CFS website, with contributions from people with M.E. and health professionals.
While it’s important to find out more about the range of symptoms experienced by different people with ME – it is also important to know that people with ME 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 ME. Women often find that symptoms worsen at different times in their menstrual cycle.
Along with debilitating fatigue and post-exertional malaise, people with ME may experience the following symptoms.
Feeling generally unwell, such as:
Sleep disturbance, including:
Pain, such as:
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:
Problems with the nervous system, such as:
Digestive problems, such as:
Intolerance and increased sensitivity to:
Frustration, anxiety, low mood and depression are sometimes experienced by people with ME as a consequence of having to cope with the impact of the condition and its symptoms. This does not mean that ME 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 ME and health professionals.
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.
