By Riki Janssen in Observant.
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.
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