ME, also known as myalgic encephalomyelitis, is a complex neurological disease with a wide range of symptoms, some of which can be disabling to patients.
It’s thought the condition affects 250,000 people in the UK. The illness, sometimes known as chronic fatigue syndrome (CFS), can affect absolutely anyone including children, however tends to be more common in women.
According to the ME Association, roughly one quarter of people with the condition are severely affected, leaving them either housebound, bed-bound or confined to a wheelchair at some stage of the illness.
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Symptoms of ME
The main symptom of ME is post-exertional malaise (an extreme form of fatigue), where simple physical or mental activities, or combinations of activities, leave patients feeling utterly debilitated.
Clare Ogden from Action for ME says: “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.
“Harvard University’s Dr Anthony Komaroff has described post-exertional malaise as ‘an illness within an illness.’”
Other symptoms include:
:: Muscle and/or joint pain
:: Painful lymph nodes
:: Sore throat
:: Difficulty thinking and concentrating
:: Impairment of short-term memory
:: Feeling generally unwell or having ‘flu-like’ symptoms
:: Nausea (sickness)
:: Heart palpitations
:: Difficulty sleeping, so issues such as insomnia, hypersomnia, unrefreshing sleep, or a disturbed sleep–wake cycle
:: Difficulty remembering words, planning or organising thoughts, and processing information
“There is currently no specific test that can detect ME,” says Ogden. “Potential biomarkers – a characteristic by which a particular biological process or disease can be identified – are still being investigated.”
As a result, diagnosis of ME is largely an exercise in narrowing down, so all possible conditions which match a person’s symptoms are gradually crossed off and ME is the last remaining answer. According to NICE guidelines, which are under revision, symptoms must have persisted for four months in adults and three months in young people before a diagnosis is made.
“The earlier the illness is recognised, the sooner symptom management and support can begin,” adds Ogden. “Many people with ME find it helps to keep a diary of their symptoms so that they can take this to their GP.”
There is no cure for ME, however there are some types of treatment which can help to ease symptoms. It’s worth noting that most people will experience improved symptoms over time and some will recover and be able to resume work and normal activities. However others will continue to experience symptoms or relapse, and may remain housebound.
The NHS recommends cognitive behavioural therapy (CBT), which can help patients with mild to moderate ME deal with the psychological aspects of having a chronic illness. CBT aims to help people accept their diagnosis, feel in control of symptoms, and gain a better understanding of how behaviour can affect the condition. Patients might also be prescribed various types of medication to control pain, nausea and sleeping problems. There’s also a structured exercise programme called graded exercise therapy (GET), which aims to gradually increase how long a person with ME can do exercise for.
Clare Odgen, from Action For Me, says it’s important to note that NHS guidelines recommending GET and CBT are currently under review, with input from patients, carers, advocates and charities, including Action for M.E. and the ME Association.
“GET and CBT are not suitable or safe for everyone with ME, particularly those most severely affected, and independent re-analysis of research into these treatments calls their effectiveness into question,” she says.