Photographer:Fotograaf: Joey Roberts
Patients are not just a little bit tired, but are permanently exhausted. Sleeping doesn't help much - if they can sleep properly at all - and they usually pay a high price for any physical exertion: remaining even more tired than they were, for days on end.
According to the present medical state of affairs, patients suffering from the chronic fatigue syndrome ME would benefit enough from behavioural therapy - where they learn how to deal more successfully with the symptoms - and physical exercise that would improve their condition. This was confirmed by a large study, led by British researchers, which was published in The Lancet in 2011. “The results of this study angered patients. Some spend whole days in bed, exhausting themselves by merely descending a flight of stairs. Many patients suffer from tremendous exhaustion for days after exercise, the so-called post-exertional malaise, or PEM. There were doubts as to whether the study was correct,” says professor of Internal Medicine and Immunology Jan Willem Cohen Tervaert. In 2016, the patient association managed to “obtain the trial data”. What appeared? Figures had been juggled, the outcomes turned out to be very minor. No more than 6.8 per cent of the participants recovered after behavioural therapy, and 4.4 per cent with extra exercise. In the control group, which had no extra behavioural therapy and/or exercise therapy, 3 per cent of the patients recovered.
ME patients feel abandoned, says Cohen Tervaert. Their disease - which sometimes emerges spontaneously, sometimes after glandular fever or Lyme disease, and sometimes after a period of exhaustion - is often put down to being in the patient's mind in the Netherlands. Not in the last place because attempts to find a cause have remained without any results for years. For quite some time, there was a research project at Radboud University in Nijmegen, but when the instigator of the centre for chronic exhaustion retired, it petered out, says Cohen Tervaert. Very little basic scientific research is being carried out in the Netherlands at the moment, so little in fact that the patient association drew up a petition. This led to questions being asked in Parliament and eventually resulted in an ME committee being set up by the Health Council to report on the issue. Cohen Tervaert also has a seat on this committee. He is an expert in the field of blood vessel inflammation (vasculitis) and autoimmune diseases. In addition to being a professor, he also works in a practice in Groningen where a cardiologist, an internist, a psychiatrist and, when necessary, a neurologist attend to these patients.
The action taken by the patient association prompted a critical column in the NRC newspaper last October by professor Harald Merckelbach, professor of Forensic Psychology at the UM. He also sees the chronic fatigue syndrome as a mental illness and refers to the comment made by the cardiologist who frequently prescribes exercise therapy as being potentially catastrophic and leading to patients deteriorating and even ending up in a wheelchair, as “rabid misinformation”.
ME is a dreadful, but not a mental illness, says Cohen Tervaert. “While ME is often haughtily put down as being nonsense and whining, the leading American National Academy of Medicine concluded in a voluminous report that it is a ‘systemic disease’. In Norway too, where a lot of research is being carried out and where even the prime minister made an appeal to not leave this group of patients out in the cold, they have arrived at the same conclusions. Various systems in the body either don't work or don't work properly. The immune system fails, there are hormonal changes, patients often sleep poorly and energy production in the cells doesn't function well. A hypothesis is that that energy production goes into hibernation. This is an attractive idea: they have no energy and are therefore incapable of producing it.” Another hypothesis is that the autonomous nervous system (that man cannot control with his mind) is in a permanent state of peril, making the patient highly sensitive to stimuli.
At the moment, the Health Council's committee is drawing up a research agenda for ME. “In any case, we need money to carry out basic research.” It is also important to sift the wheat from the chaff. “When are you tired and when do you have ME? We discussed this at length in the committee. Someone who has just received a doctor's degree and who is raising three children at the same time, is tired, but does not have ME. We have to be strict. The Americans say that a patient must suffer from PEM, so be tired days after exertion. That is a good indicator for the diagnosis ME ”
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