Moe van de virussen

Teddington (Engeland), juni 1988,

While any attempt to disseminate information about the devastating illness myalgic encephalomyelitis (ME) must be welcomed, it is most regrettable that the NTvG chose to publish two very superficial and selective ‘reviews’ full of misleading statements and even factual errors (1988; 997-9 1988;and 999-1001).

The most misleading aspect of the articles were the many references to fatigue (moeheid). ME sufferers do not feel tired, they feel utterly exhausted! To use the term fatigue without once mentioning the severity trivialised the distress which ME sufferers experience. Had any of the authors been familiar with the clinical presentation of this disease, they would have been aware of that and their approach would undoubtedly have been different.

The many inaccuracies were also a source of irritation. For instance, Kapsenberg stated that there was a lack of evidence for an infective process (p. 998) during the first epidemics of ME. This assessment suggests that the author had skipped through the literature. Even during the epidemic at the Royal Free Hospital in 1955, there was plenty of evidence for an infective process (e.g. swollen glands, sore throats, fever and morphological changes in lymphocytes).1 The same article also implied that nurses, many of them experienced in treating poliomyelitis, suddenly developed a hysterical reaction to the fear of this disease. This however is pure speculation. As fas as the epidemic of encephalomyelitis at the Royal Free Hospital is concerned, there was no poliomyelitis outbreak in North London at the time and the nurses had no reason to be anxious. In fact, the early cases were initially diagnosed as glandular fever. Hardly the stuff of which outbreaks of mass hysteria are made!

Jennekens and Van Gijn too reviewed the background literature without checking the facts (1988;999-1001). The psychiatrists who proposed that the outbreak at the Royal Free was nothing more than mass hysteria did not have access to files of sufferers.2 The 100 case notes which they examined were of nurses who were considered by the attending physicians not to have had ‘Royal Free disease’ but other conditions.

The discussion of the Royal Free epidemic is just one example of the bias shown by the authors in their interpretation of the literature. It is our contention that they gave a distorted picture of ME and that this will do little to promote the understanding of this most debilitating illness. Dutch physicians deserve better!

Bilthoven, juni 1988,

Het is jammer dat de vertegenwoordigers van de ME Association in London/Richmond het virologische commentaar als oppervlakkig en misleidend beoordelen (1988;927-9). De bedoeling was om op het bestaan van een ernstig ziektebeeld te wijzen, waarvoor zonder bewijs bepaalde virussen als oorzaak worden aangewezen. In de conclusies aan het einde wordt tweemaal het woord ‘ernstig’ genoemd en ook de slotzin laat duidelijk de intentie van de schrijfster zien.

De benaming myalgische encephalomyelitis bevat de uitgang -itis, die een ontsteking aanduidt van het stamwoord. Er zijn bij de ziekte nooit aanwijzingen gevonden voor een ontsteking van hersenen en ruggemerg. Daarom is deze naam misleidend.1 Inmiddels heeft in de Verenigde Staten een informele, gezaghebbende werkgroep getracht consensus te verkrijgen over de definitie van hetgeen zij nu als ‘chronic fatigue syndrome’ aanduiden.2 De lijst bevat ‘major’ en ‘minor’ criteria voor symptomen, laboratoriumuitkomsten en bevindingen bij lichamelijk onderzoek. Opvallend is het grote aantal aandoeningen dat in de differentiaaldiagnose moet worden betrokken. Op patiënten die aan de definitie voldoen, dient zich de research te richten om kans te hebben de mogelijke oorzaak op te sporen.

Ik ben het volledig met de vertegenwoordigers van de ME Association eens dat het onbehoorlijk is patiënten – en zeker degenen die behoren tot de ‘heavy duty nurses’ in de medische professie – die in de Nederlandse situatie in de WAO terechtkomen, af te schepen met de als beledigend ervaren diagnose hysterie.