Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E) is a serious long-term condition causing persistent fatigue (exhaustion) that affects every day life and functioning, and doesn't go away with sleep or rest. It varies person to person, and each person will usually have good and bad periods where they may be able to do more or less.
It's estimated that 250,000 people in the UK have it, although it's more common in women than in men.
It's not known what causes CFS/M.E. Various theories have been suggested, the most common being:
- a viral or bacterial infection
- problems with the immune system
- an imbalance of hormones
- psychiatric problems, such as severe stress and emotional trauma
- inflammation of the brain and spinal cord
It's thought that some are more susceptible to the condition because of their genes, as it seems to be more common in some families. More research is needed to confirm exactly what causes the condition, and clinical trials take place often in Europe and USA, but there is not currently enough funding for this to be carried out fully.
Not all of those with the condition will have every single symptom, in fact most won't. The main factor is the fatigue, as suggested by the name.
- The main symptom is persistent physical and mental fatigue. This doesn't go away with rest, and can really limit everyday activities. A lot of people with CFS/ME describe the fatigue as 'overwhelming' and like nothing they've ever felt before.
- Being too active can make symptoms worse. This is called 'post-exertional malaise'. The effect of this isn't always immediate, and can be felt beginning hours later and even the next day.
- Fatigue caused by CFS/ME is not solved with sleep or rest, and does not feel like normal 'tiredness'.
- Muscle and joint pain
- Headaches and migraines
- Cognitive difficulties
- Poor short term memory
- Poor concentration
- Difficulty organising thoughts
- Difficulty finding the right words
- Painful lymph nodes
- Stomach pain and other problems similar to Irritable Bowel Syndrome (IBS)
- Sore throat
- Sleeping problems
- Feeling unrefreshed by sleep
- Sensitivity to light, sound, temperature, alcohol, and certain foods
- Psychological difficulties
- Panic attacks
- Difficulty controlling body temperature
- Excess sweating
- Balance Problems
- Increased vulnerability to common viruses and infections
There is no test to diagnose CFS/ME. Diagnosis is made by a set of guidelines, and ruling out other conditions such as anaemia, an under-active thyroid gland, or liver and kidney problems.
A GP will ask about your history, most likely conduct a physical examination, and may carry out blood tests, urine tests and scans.
NICE Guidelines for CFS/ME Diagnosis
Guidelines released in 2007 from NICE state doctors should consider diagnosing CFS if a person has fatigue and all of the following apply:
- It is new or had a clear starting point (it has not been a lifelong problem)
- It is persistent or recurrent, or both
- It is unexplained by other conditions
- It substantially reduces the amount of activity someone can do
- It feels worse after physical activity
The person should also have one or more of these symptoms:
- Difficulty sleeping or insomnia
- Muscle or joint pain without inflammation
- Painful lymph nodes that are not enlarged
- Sore throat
- Cognitive difficulties, such as difficulty thinking
- Symptoms getting worse after physical or mental exertion
- Feeling unwell or having flu-like symptoms
- Dizziness or nausea
- Heart palpitations without heart disease
This diagnosis should be confirmed by a clinician after other conditions have been ruled out. The symptoms listed above must have persisted for at least four months in an adult and three months in a child or young person.
There is no cure for CFS/ME, so treatments aim to help relieve symptoms.
Cognitive Behavioural Therapy (CBT)
CBT is a type of therapy that can help someone with CFS/ME manage their condition by changing the way they think and behave.
CBT aims to help reduce the severity of symptoms and the distress associated with CFS. It works by breaking down overwhelming problems into smaller parts, and by breaking the negative cycle of interconnected thoughts, feelings, physical sensations and actions.
The treatment will be tailored to individual needs and may include some of the following:
- Helping you accept your diagnosis
- Challenging feelings that could prevent your symptoms improving
- Trying to increase your sense of control over your symptoms
The use of CBT doesn't mean CFS is considered to be a psychological condition. It's often used as a treatment for a variety of long-term conditions.
Activity management is another aspect of a treatment programme. It involves setting individual goals and gradually increasing activity levels. A patient may be asked to keep a diary of their current activity and rest periods to establish their baseline. Activities can then be gradually increased in a way they find manageable.
There's no specific medication to treat CFS/ME, but different medications may be used to help relieve certain symptoms of the condition.
Over-the-counter painkillers can help ease any muscle pain, joint pain and headaches. Stronger painkillers can also be prescribed by a GP, although they should only be used on a short-term basis.
Antidepressants can be useful for people with CFS/ME who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed.
Those who suffer from nausea as part of the condition may benefit from an antiemetic.
Pacing may be a useful way of controlling CFS symptoms. It involves balancing periods of activity with periods of rest.
It means not overdoing it or pushing beyond limits. If a patient does more than they are ready to, this could slow down their progress in the long term. Over time, they can gradually increase their periods of activity while making sure they're balanced with periods of rest.
Learning how to make the most of their energy helps increase the amount they can do. However, they may need to arrange their daily and weekly activities around when they can be active and when they need to rest.
If they pace their activities at a level that's right for them, rather than rushing to do as much as possible in a short space of time, they may be able to make steady progress.
However, there are some uncertainties about pacing. There's insufficient evidence on the benefits or harm of this treatment, although it's often recommended for CFS/ME.
The following recommendations are also often found useful:
- Avoiding stressful situations
- Avoiding caffeine, alcohol, sugar, and sweeteners
- Avoiding food and drink the individual is sensitive to
- Eating small and regular meals to avoid nausea
- Spending time relaxing and resting
- Not sleeping or napping excessively
The Student Room has a CFS/ME society in the Health forum that is used by those wanting more information about the condition, and those with the condition. It can be found here.
May 12th is CFS/ME & Fibromyalgia Awareness Day. Keep an eye on the Health forum around this time, as there will be plenty to get involved with.
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