It’s estimated that a quarter of a million people in the UK suffer from chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). Could you be one of them?
What is chronic fatigue syndrome?
Chronic fatigue syndrome (CFS), also known as ME (myalgic encephalomyelitis), is a long-term illness that causes extreme tiredness as well as a variety of other symptoms.
Many people refer to the condition as CFS/ME. You might also see it written as myalgic encephalomyelitis (chronic fatigue syndrome).
People who suffer from ME or CFS regularly experience debilitating, extreme fatigue, particularly after mental or physical exertion.
Who is affected by CFS/ME?
An estimated 250,000 people in the UK are affected by chronic fatigue syndrome. It’s more common in women than men, though anybody can be affected.
In adults, ME normally develops between a person’s 20s and 40s. Some children can also suffer from it, most commonly between the ages of 13 and 15.1
Symptoms and diagnosis
CFS/ME has a broad variety of common symptoms, including:
- Sleeping problems including difficulty sleeping, disturbed sleep, or not feeling refreshed after sleep
- Aches and pains in muscles and joints, without visible inflammation
- Sore throat, or lymph nodes that are painful but not enlarged
- Cognitive impairment: this could include difficulty concentrating or thinking, short-term memory loss, or trouble with finding words, processing information or organising/planning
- General malaise, tiredness or ‘flu-like’ symptoms
- Heart palpitations, but without any diagnosed cardiac problems
- Dizziness or nausea
- A worsening of any of these symptoms as a result of physical and/or mental exertion
Because there is no clinical test for CFS/ME, healthcare professionals are advised to consider that someone may have the condition if they have a) one or more of the above symptoms and b) fatigue with all of the following features:
- It is recurrent and/or persistent
- It is not lifelong, but is recent or has a specific onset
- It has significantly reduced one's activity
- It is brought on after mental or physical exertion - usually with a delay of at least 24 hours – with a gradual recovery over several days (this is called post-exertional malaise/PEM)2
Symptoms of CFS can have several other causes, which means that diagnosing CFS/ME is usually a process of elimination. Other medical conditions need to be ruled out first.
If there's no test for chronic fatigue syndrome, how would I know if I had it?
One of the reasons that diagnosis of CFS/ME can take a long time is that eliminating other possible causes can be a lengthy process. Many conditions have similar symptoms.
Because diagnosis isn't straightforward, many patients don't receive one quickly enough; it can sometimes take years.
Failure to diagnose CFS/ME can cause additional problems for people suffering from the condition. Living with chronic fatigue can make it difficult to work, study, socialise or care for a family. And, without the right support, the condition itself can get worse because stress is known to exacerbate it.3
How serious can the symptoms of CFS/ME be?
There are various degrees to which people are affected, usually defined in three categories:
- Mild: people in this category are usually able to work or study, but may need to use their weekends just to recover from doing so. They may also reduce or stop other social or leisure activities for the same reason
- Moderate: people in this group tend not to be able to work, have reduced mobility in their daily lives, and may need to rest or sleep in the afternoon, with their sleep at night often being disturbed
- Severe: people with this level of the condition are often only able to do very basic things for themselves (such as washing or brushing their teeth), if at all. They are usually very sensitive to light and noise, and are often house-bound4
If I do have CFS/ME, what can I do?
Currently there is no outright cure for CFS/ME. There are, however, various options to help manage the condition, which your GP should be able to talk through with you. For specific symptoms – such as disturbed sleep, pain and headaches – there are medicines available.
As for dealing with fatigue, this will vary from person to person, but many people with CFS/ME manage their activity and pace themselves in order to cope better on a day-to-day basis. There are a variety of approaches and coping strategies.
What should I do if I think I have chronic fatigue syndrome?
Only a qualified doctor can properly diagnose ME/CFS, so if you think you have some of the symptoms, book an appointment with your GP. At BMI Healthcare we have specialists in neurology who can help give you the diagnosis you need.
To find out more call us on 0808 101 0337 or make an online enquiry.
1NHS; Chronic fatigue syndrome
2ME Research UK; What is ME?
3ME Association; Symptoms of ME
4NICE; CFS/ME diagnosis and management