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Worcestershire Health and Care NHS Trust

What is Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome (CFS) is sometimes called Myalgic Encephalomyelitis (ME). These terms are often used interchangeably, and essentially is doesn’t matter which you choose to use. However the term syndrome means “A condition characterised by a group of associated symptoms”. This term therefore encompasses more than the fatigue, and recognizes that there are many associated symptoms. Furthermore, the term makes no assumptions about the cause; and is therefore an apt name for the condition.    
CFS/ME affects people in different ways, and often people experience different symptoms. However the symptom shared by all sufferers is persistent and disabling fatigue. This is often of relatively sudden onset, as opposed to life long, and for a diagnosis to be made the fatigue has been present for more than four months. It affects both physical and mental functioning, and includes a feeling of weakness, tendency to tire easily, reduced attention span and concentration, poor short-term memory, word-finding difficulties, and inability to plan or organise thoughts.  
Individuals will often experience a number of other symptoms, including;
  • Pain – This is often persistent and difficult to relieve with standard remedies. It can be muscular, rheumatic, neuropathic, with or without tingling and numbness, and can include headaches (often migraine-like).
  • Post-exertional malaise – Pain and fatigue are often experienced following any activity. This includes any amount of activity, not just formal exercise. This may occur at the time of activity, 24-48 hours after or during rest.

  • Sleep disturbance – This can take many forms, such difficulty getting to sleep, early wakening, or excessive sleeping. Overall there appears to be a disrupted sleep/wake cycle, and many people report that sleep is unrefreshing and unrestorative.
  • Recurrent sore throat – This often occurs with or without enlarged glands.
  • Digestive disturbances – These include; nausea, loss of appetite, indigestion, excessive wind, bloating, abdominal cramps, alternating diarrhea and constipation. These symptoms are often similar to IBS.
  • Intolerances – Intolerance or sensitivity/altered tolerances are very common. Often people develop an intolerance to alcohol, some foods, medications (particularly antidepressant medication), and other substances.
  • Other symptoms – Many people experience other associated symptoms such as temperature disturbance, poor balance and dizziness on standing or movement, poor coordination, increased sensitivity to noise and light among many more.    
Many of the associated symptoms of CFS/ME overlap with other conditions and illnesses, which is why it is a difficult condition to diagnose. Unfortunately, there is no diagnostic test for CFS/ME. A diagnosis is generally made by taking an extensive medical history, assessment of symptoms and medically testing and ruling out other possible conditions or causes for the fatigue. Unfortunately, this often means that patients have a long and frustrating journey to receive a diagnosis and the treatment that they require.  
ME Soundbite

Causes of CFS/ME

As yet, there is not enough research to confirm the causes of CFS and there remains to be a lot of confusion around the condition. However, rather than looking for just one cause, consider that many different factors interact to make a person more vulnerable or resistant to the development of the condition.  
Possible factors that may put somebody at risk of CFS/ME are;
  • Gender – More females suffer from CFS/ME than males.
  • Family history – Research suggests that those who have family members with CFS/ME are more likely to develop the condition themselves.
  • Personality – Evidence suggests that individuals with certain personality features are more likely to develop CFS/ME. Often, individuals with the condition have high expectations of themselves, are somewhat perfectionist and frequently view strength, ability to cope and independence as very important personal characteristics.
  • Other conditions – Individuals have often suffered from, or are currently suffering from other health conditions, such as irritable bowel syndrome, fibromyalgia, or depression and anxiety conditions.  
Often, these factors put people at risk of developing CFS/ME. However, this doesn’t mean that they will. It simply means that they are perhaps more likely or vulnerable than others. There is a usually a trigger to the development of fatigue symptoms;
  • InfectionsOften sufferers will fall ill with an infection. Viral infections, glandular fever and Q virus are common, but many other viruses have been linked with the condition.
  • Life events - It seems that individuals often undergo a period of significant stress, either physical or emotional, prior to or during the onset of CFS/ME symptoms.
  • Physical injuries or excessive physical exertion – This is sometimes linked the onset of CFS/ME, although it is more common within fibromyalgia sufferers.
  • Immunisations – The onset of symptoms following immunisation has been suggested in some reports.  

What maintains the fatigue?

Once a person has developed CFS/ME symptoms, factors interact to maintain and further develop the condition;
  • Sleep disturbance Poor sleep may well contribute to poor concentration and memory, and exacerbate fatigue and other symptoms. Excessive sleeping may also lead to a loss of mental and physical fitness.
  • Activity - Many individuals with CFS/ME struggle or fight against their symptoms, and often attempt to ‘overdo’ and take advantage of any good day, by trying to compensate for activities they haven’t achieved on bad days. Following this they often then need to rest and recover. This ‘boom/bust’ cycle is a very common feature of CFS/ME which can gradually lead to reduced tolerance and ability to be active.
  • Rest – There is now much evidence to show that prolonged rest is unhelpful, and some indirect evidence to show it is actually harmful. Inactivity if prolonged can become a problem in its own right.
  • Mood disorders – can contribute to symptoms, and present significant blocks to recovery.
  • Beliefs and attitudes – there is now strong evidence that certain beliefs can play a role in the maintenance of the illness. At the outset, there is often a strong belief that once must ‘push on’ regardless of the level of fatigue. This can be counteracted later by a real fear of making things worse. Beliefs about the danger of an activity can therefore act as a troublesome maintaining factor.
  • Role of professionals – Some individuals may have experienced unhelpful interactions with health professionals, due to the confusion around the condition. This may have been in the form of inappropriate or lack of advice, misdiagnosis, or a failure to acknowledge the symptoms or the condition. This can cause real distress and alienation in a person suffering from and trying to make sense of the symptoms. Fortunately this is becoming more infrequent as education around the condition improves.   
Research has shown that the best way to treat the condition in order to improve symptoms, gain a better quality of life and improve functional independence is by adopting an approach which encompasses biological, psychological and social factors.
As a service, we cannot give hope that we can get rid of the symptoms. By its very nature, CFS is a persisting condition and there are no known treatments to cure it. However, by adopting the biopsychosocial model you can gain further control over the symptoms, reduce the effect that it has on your life and in turn, improve your quality of life and functional independence, despite the fatigue.