Ziekte Review Speight 2013

In een overzichtsartikel schetst dr. Nigel Speight op bondige wijze

de geschiedenis, de symptomen (het "klinisch beeld") en de controverse.

History

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Following Ramsay's work the chronic illness that he had described as ME was accepted as a basically organic illness for over a decade. In 1960, the WHO accepted it as a recognizable disease entity and placed it in the section on Neurology.

One might have expected there to have been significant research efforts to find both a cause and a cure but these did not happen on the scale one would have expected. This was largely due to the controversy that was generated by a paper in 1970 by two psychiatrists, McEvedy and Beard. They conducted a notes review on the Royal Free patients. Without actually seeing any of the patients they then hypothesized that the whole epidemic and the subsequent disability suffered was based on no more than "mass hysteria."

Attempts were made to abolish the term ME, and to replace it with the term "Chronic Fatigue Syndrome", and this has been vigorously opposed by the patient organisations.

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Clinical Features

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The main symptoms are as follows:

Low energy levels combined with undue fatigability:

This worsening of fatigue following exertion can be regarded as the cardinal symptom of ME. It includes both physical and mental fatigue, and either physical or mental exertion can make the fatigue worse. Most importantly, exertion worsens all the other symptoms, so the term "post-exertional malaise" is appropriate. There may be a delayed reaction to a period of gradually increasing exertion and the recovery to baseline can be similarly delayed.

Headache: a prominent symptom in >90% of cases.

It can be constant and generalised and in severe cases is extremely unpleasant. One of the alternative labels for ME in the past was "atypical migraine.". Of course migraine can be superimposed on top of ME, so diagnosing it and treating it can be beneficial.

Myalgia:

This is virtually a cardinal symptom. As stated above it is made worse by exertion. Sufferers describe having ME as like "running a marathon when suffering from influenza." Severe cases can suffer "total body pain," presumably due to myalgia of all muscle groups.

Abdominal Pain:

This can be quite severe in the acute onset cases. Whether it is due to affection of the external abdominal musculature or intra-abdominal pathology is unclear.

Sleep Disturbance:

In severe cases of sudden onset, there can be hypersomnolence, with sleep duration of 16-23 hours a day. During later stages of the illness, this can be replaced by sleep reversal, whereby the patient sleeps through until say 2 pm but cannot get to sleep again until after midnight.

Neurological symptoms:

Problems with memory, concentration, cognition, word recognition
Sensitivity to sound, light, smell, and touch
Paraesthesiae, muscle twitching
Sudden attacks of severe generalized pain ("Sensory Storms")

Autonomic symptoms:

Problems with temperature control (feeling inappropriately hot or cold), and postural hypotension

Undue sensitivity to viral infections:

Although this aspect is seldom mentioned in the literature, I have found this a classical symptom in mild or moderately affected children. A virus that sets a sibling back for 1 to 2 days may precipitate a relapse lasting weeks in an ME sufferer.

Management

There is currently no curative treatment available, and this has led to controversy about different possible approaches. Much research has been done on cognitive behavioural therapy (CBT) and graded exercise treatment (GET). Most studies have been on relatively mild cases and may have included cases of simple depression i.e., they were not ME as defined above.

There is no evidence that these approaches to management [CBT and GET, FT] are effective in moderate or severe cases, and indeed too forceful regimes of GET are potentially harmful.

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Symptomatic treatment for pain and sleep disturbance is appropriate, together with advice against over-exertion or attempts to "fight one's way" out of the illness.