Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term (chronic) neurological condition that affects the nervous and immune systems.
People with ME/CFS experience severe pain and fatigue associated with post-exertional malaise (PEM). This is when the body is not able to recover after using even small amounts of energy. This fatigue feels very different from ordinary tiredness. It might take a day or 2 to kick in after physical, mental, or emotional exertion.
ME/CFS affects more women than men, can affect children and adults of all ages and from all social and ethnic groups. It doesn't go away with sleep or rest and affects everyday life. It can sometimes be diagnosed as post viral fatigue syndrome (PVFS).
Symptoms of ME/CFS
The symptoms of the condition vary from person to person. There may be times when your symptoms improve and you'll be able to do some normal everyday activities. At other times, symptoms may get worse, affecting your daily life.
If you experience new symptoms, talk to your GP or specialist as the new symptoms may be unrelated to ME/CFS. Women often find that symptoms worsen at different times in their menstrual cycle. Not everyone will experience all of the symptoms.
Post-exertional malaise
People with ME/CFS experience severe pain, fatigue and a range of other symptoms associated with PEM. This is the body and brain’s inability to recover after using even small amounts of energy.
Simple physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms.
Other symptoms of ME/CFS include:
- feeling generally unwell
- pain
- broken sleep
- problems with concentration, thinking and memory (‘brain fog’)
- speech and language problems, including word-finding difficulties
- poor temperature control
- dizziness
- being very sensitive to light and sound
- nausea
- loss of appetite
- muscle pain (myalgia)
For more information on the symptoms of ME/CFS visit the
Action for M.E. website.
Frustration,
anxiety, low mood and
depression are sometimes experienced by people with ME/CFS because of the impact of the condition and its symptoms on their lives. This does not mean that ME/CFS is a mental health condition.
Causes of ME/CFS
Further research is needed to confirm what causes ME/CFS. There might be various factors involved and there may be a number of different types of the illness. These different sub-groups still need more research to be identified, including how they lead to different experiences of the condition and how it develops.
ME/CFS may appear suddenly or more slowly over time. It may follow an infection, typically, but not always, viral.
Other possible triggers can be:
- trauma
- surgery
- stressful major life events
In some cases, there may be no identifiable trigger.
How is ME/CFS diagnosed?
There's no single test to detect ME/CFS. A diagnosis is made after other possible known causes for symptoms have been excluded.
The earlier the illness is recognised, the sooner you can get help to manage your symptoms. Many people with ME/CFS find it helps to keep a diary of their symptoms so that they can take this to their GP or specialist.
Your GP will usually:
- do a physical and mental examination to rule out other conditions
- ask about recent travel, tick or insect bites, unusual infections, and drug and alcohol use
- review current medication
- arrange tests
They may be able to make a diagnosis after 3 or 4 months of seeing a pattern of symptoms. Anyone suspected of having ME/CFS should be considered for routine blood tests to identify other possible illnesses. More investigation may be needed if the diagnosis remains in doubt.
Some people with ME/CFS also have another long-term condition and it's important that you talk to your GP about how to manage the symptoms of the 2 conditions.
Treating ME/CFS
Although there's no cure for ME/CFS, there are ways to help manage your symptoms.
Because of the complexity of the illness different things work for different people. Your GP may be able to support you through managing your individual symptoms.
To decide what treatment is right for you, you should look at the evidence, including published research and patient surveys. Make sure you fully understand what the treatment involves before you make a decision. You have the right to decline any treatment option you do not feel comfortable with.
