the field. Nobody dared to attack the IOM report, instead they attacked me, a “messenger” informing the public about this ground breaking report. I was worried of the fact that those who went against me seemed to be frightened of new data and not willing to discuss recent international research results. I argued that the PACE study had not shown significant improvement for CBT and the recent Smile study concerning LP had profound weaknesses, only 30% of the eligible patients were enrolled in the study and the sickest ME patients had not been included. I also wrote I was surprised that Wyller characterized ME patients as a small and vocal group. After all, the Norwegian ME association has 4000 members and few of these support Wyller. “Fortunately it is rare for such disrespect from a doctor for the patients he is supposed to care for is uttered so clearly”, I wrote. Further, I wondered how Wyller could characterize international research in the field as old-fashioned and outdated. “Perhaps these new findings are threatening to his psychosomatic position Wyller is basing his academic career, a paradigm which is quickly losing ground? However, for the ME patients this development gives hope for the future” was my conclusion. Wyller’s next move came a few days later: “False information about ME may scare patients from documented treatment”. His article illustrated his views. I therefore refer extensively to parts of it: “Saugstad is a highly recognized researcher in neonatal medicine. It is therefore surprising that he, in the ME debate, breaks several rules for scientific reasoning and dissemination. That inflammation detected in the central nervous system of ME patients does not prove that inflammation is the cause of fatigue. To illustrate this point from another area: That patients with lung cancer often have yellow fingers does not implicate that yellow fingers are causing cancer (both yellow fingers and cancer may be caused by smoking). Saugstad has not published his research findings. Saugstad writes that he has in the last years built up a strong research group on ME. Why have the findings not yet been published? Wyller then continued to inform that he had published 25 research articles in the field with a holistic approach to the complex disease that ME is. He then indicated I am biased due to having a close relative with ME. Two Norwegian professors of medicine gave me their support against his emotional attack. In his next reply he continued to attack these two. As mentioned Wyller is a firm defender of the PACE study and when the results from the SMILE study came he embraced these results – he had for years supported LP and CBT for ME. Why not try them - they do not have any adverse effects, he suggested. I replied this is wrong. “Several ME patients report adverse effects of these two regimes. The major distinction in the understanding of ME is perhaps between those who understand this and those who do not”. Recovery Norway also attacked me claiming that I told ME patients they have an inflammation in the brain. This is definitely wrong I replied, I never diagnose ME patients I only refer to the scientific literature when I am asked. In my final statement I informed that unfortunately Recovery Norway had “forgotten” to disclose that several of their members were heavily involved financially in LP as LP instructors. This debate probably represents a watershed in the Norwegian ME debate and understanding. The psychosomatic ME wing had previously given the impression that they often are harassed by aggressive patients and relatives. They have also spread the information that those who support biomedical findings are afraid of new results. The debate demonstrated that the opposite is the case. The psychosomatic lobby’s reaction to new biomedical information was by resorting to personal and emotional attacks on us who had a different view. Their disrespect for the patients they are supposed to serve shocked many of the neutral bystanders. The debate was probably initiated due to the psychosomatic wing rapidly losing ground after the publication of the IOM report, the new emphasis on biomedical ME research by NIH and also the Norwegian Research Council, the CDC’s change in attitude to CBT, and the reanalysis of the PACE study showing minimal if any effect of CBT. Several of the psychosomatic supporters had invested their prestige and based their whole career on findings that supported their view. I understand it must be painful to see how the basis of their theory quickly eroded. This also explains their uncritical embrace of the Smile study. During the debate which lasted many weeks I received overwhelming support from more than 1000 persons in the newspaper and on social media. Ola Didrik Saugstad, MD, PhD, FRCPE Proferssor (em) of Pediatrics University of Oslo Invest in ME research (Charity Nr. 1153730) www.investinme.org Page 39 of 56
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