Management
There is currently no curative treatment but medications can be used to help manage or control some symptoms, such as pain and sleep disturbance.
The most important aspect of ongoing care is activity management. This involves striking the right balance between activity and rest so as not to exacerbate symptoms. This is called pacing.
Activity needs to be gradually increased within any individual's limitations and symptom fluctuations. The initial tendency to get into a cycle of excessive activity (such as going back to work) followed by further time off from work through ill health. This reduces the chance of any meaningful improvement. Therefore specialist involvement is needed at an early stage, including physiotherapy and occupational therapy.
Some people find complementary therapies such as acupuncture useful for ME, but there are many unsubstantiated 'miracle cures'.
One therapy that has worked for some but not all people who've tried it is called reverse therapy (RT). RT is a simple educational process that teaches people to identify the triggers which cause symptoms such as fatigue and unexplained pain. As soon as these triggers are recognised and understood then progress can be made to eliminate at least some of the causes of distress. In this way RT can provide a practical means of managing the emotional, cognitive and physiological processes that influence symptoms.
The current NICE guideline has not been updated since 2007 and continues to be very controversial. The ME Association has long regarded these guidelines as unfit for purpose, particularly because of the inclusion of two controversial therapies: graded exercise therapy (GET) and cognitive behavioural therapy (CBT)[
11]. Many patients have found these therapies to be very detrimental.
Some studies have reported that CBT and GET are effective treatments for ME. However, one study found that there may be similar or poorer outcomes when used in routine clinical practice[
12].
Some studies have shown that, although CBT may bring about changes in self-reported fatigue for some patients in the short term, there is a lack of evidence for long-term benefit or for improving physical function, indicating that CBT may cause distress if used inappropriately[
13].
The management of ME is therefore very controversial and it is considered by some that CBT and GET may not only be ineffective and not evidence-based but also potentially harmful for many people with ME[
14].
The issue of CBT being used as a therapy on the basis of the idea that ME is essentially a psychological illness that may well be triggered but is then perpetuated by abnormal illness beliefs and abnormal illness behaviour is an approach that many patients find both inappropriate and offensive. The NICE guideline is currently being reviewed.