Myalgic Encephalomyelitis/ Chronic fatigue syndrome (ME/ CFS)
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/ CFS, is a long-term condition that can cause symptoms affecting different parts of the body. The most common symptom is debilitating (or very severe) tiredness (fatigue).
Symptoms of ME/ CFS
It's not known what causes ME/ CFS.
It can affect anyone, including children, but is more common in women and tends to develop between the mid-20s and mid-40s.
There is no specific test for ME/ CFS.
It’s diagnosed based on your symptoms and by ruling out other conditions that could cause those symptoms.
If you have ME/ CFS all of these four symptoms should be present for at least six weeks in adults and four weeks in children:
debilitating (or very severe) fatigue that is worsened by activity, and does not significantly improve with rest
post-exertional malaise (PEM) - symptoms that get worse after physical or mental activity -the effect of PEM can be delayed by hours or days, and can take a long time to recover
sleep problems - including difficulty sleeping or interrupted sleep, feeling severe tiredness after sleeping, or flu-like symptoms and stiffness on waking
problems with thinking, concentration and memory (brain fog)
Some people with ME/ CFS may also have other symptoms, such as
- muscle or joint pain
- headaches
- a sore throat or sore glands that aren’t swollen
- feeling dizzy
- fast or irregular heartbeats (heart palpitations)
The severity of symptoms can vary from day to day, or even within a day.
The symptoms are similar to the symptoms of some other illnesses.
It is important to see your GP to rule out other conditions and get a correct diagnosis.
Diagnosing ME/ CFS
There isn't a specific test for ME/ CFS.
It's diagnosed based on your symptoms and by ruling out other conditions that could be causing your symptoms.
Your GP will ask about your symptoms and medical history. You may also have blood and urine tests.
As the symptoms of ME/ CFS can be similar to those of many other illnesses that get better on their own, a diagnosis of ME/CFS may be considered if you do not get better as quickly as expected.
A diagnosis of ME/ CFS can only be confirmed after three months of persistent symptoms which are not explained by other conditions.
Treating ME/ CFS
While there’s no cure for ME/ CFS, there are treatments that may help you manage the condition and relieve the symptoms.
Your treatment will depend on how ME/CFS is affecting you.
Treatments include:
- energy management – where you are given advice about how to make best use of the energy you have without making your symptoms worse
- cognitive behavioural therapy
- medication to control symptoms such as pain and sleeping problems
People with ME/ CFS may need to adapt their daily routine and pattern of activities on a long-term basis.
While exercise can be helpful for some, it may worsen the symptoms of others.
Many people with ME/ CFS improve over time, although some people with ME/ CFS do not make a full recovery.
Children and young people with ME/ CFS are more likely to recover fully.
Living with ME/ CFS
Living with ME/ CFS can be difficult.
Debilitating fatigue and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes.
ME/ CFS can also affect your mental and emotional health, and have a negative effect on your self-esteem.
As well as asking your family and friends for support, you may find it useful to talk to other people with ME/ CFS.