techniques to master challenging life conditions and diseases without curing these. The authors (Recovery Norway) are wrong and not up to date when they write: ”The debate regarding these problems is often about whether the disease is physical or psychosomatic. Lack of knowledge dominates this field.” After the report about ME from Institute of Medicine (IOM) in USA was published in 2015, there has been a paradigmatic change in the view regarding ME. It was concluded that ME is a serious physical, chronic and complex multisystem disease which is strongly debilitating and the misconception that the disease is psychogenic or a form of somatization must stop.” I then referred to a recent study (2016) from the USA with Maureen Hanson as senior author: “In one study from the Cornell University in the USA the researchers were able to identify biochemical and biological deviations in ME patients, which resulted in the following statement: “Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin." (quote by Maureen Hanson in Medical News Today, Tuesday 28 June 2016). I continued: “It is the supporters of the concept that ME is psychogenic who maintain to underline the lack of knowledge regarding ME. I agree with the Norwegian Research Council which supports biomedical ME research in line with the US effort to find treatment for the disease. Psychosomatic research has not brought us closer to understanding of ME and may have contributed to a prevention of development through years.” I did not, however want to disregard the Recovery Norway group and therefore added: “I belong to those who welcome the initiative of the group. It is useful to obtain information on why some were cured and others not. At the same time the group’s credibility is weakened by lumping together several poorly explained conditions such as fatigue, pain and tinnitus. One problem for ME patients has been that the health care system has not listened to the sickest, nor even cared to examine them. We must listen to the advice both from those who have improved and from those who still have not”. This article from me resulted in an outcry from those who supported the concept of ME as a psychogenic disease. Two neurologists from the University Hospital Page 38 of 56 www.investinme.org in Bergen, one even a professor, wrote that I was misusing my professor title.” Saugstad is exploiting his medical authority to oppress patients who have been cured and want to share their experience.” These two neurologists told us they had treated ME patients for years and never or at least only very rarely, seen any trace of inflammation in the central nervous system. I replied by referring to Mady Hornig and co-worker’s recent article (2017) showing ME patients have an immune signature in Cerebrospinal fluid reflecting the central nervous system and the study of Nakatomi Y et al (2014) indicating ME patients have activated immunecells in the brain. I also quoted Harvard Professor Komaroff who commented that if these findings were reproduced it indicates that ME patients have a low graded inflammation in the brain. A Norwegian professor of immunology confirmed that my comments were relevant. The two neurologists never replied. Wyller wrote a commentary: “Saugstad’s claims are misleading. That the immune-system is activated in ME does not mean ME is an inflammatory process. The immune-system is also activated in depressions, social stress and loneliness. Does Saugstad mean these are inflammatory conditions as well?”. Wyller is a firm supporter of the PACE study and wrote: “The PACE study showed that CBT has positive effect on ME. The study has been criticized but the main conclusion has not been disproven. Another recent study shows equivalent good effect of LP. That mental conditions may contribute to ME is documented well for instance by MRI pictures of the brain. This does not mean that the disease is psychogenic, but that the mechanisms are complex and both mental and somatic factors may play a role.” And Wyller continued: “Professor Saugstad introduces himself as an ME expert but has never carried out ME research himself. He is stuck in an old fashioned distinction between “body and mind” and is followed by a small but vocal group of ME patients who are fighting frantically against the concept that “the mind” has anything to do with this matter.” Wyller concluded his article: “I beg new patients, relatives, health workers – don’t listen to this pessimistic outdated message! Instead listen to the majority of patients - many have been completely cured – who make use of modern and documented therapies.” At this stage of the debate a number of doctors, ME patients and relatives had contributed to the debate with their own opinions and experiences. Wyller did not receive much support. In my reply I underlined I have never pretended to be an ME expert. But I wondered why some people became so emotional because I mentioned recent publications in Invest in ME research (Charity Nr. 1153730)
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