In September 2017 a new public ME debate was kicked off in Norway’s largest newspaper, Aftenposten. During the years there have been many discussions and articles about ME in Norwegian media. However, this time it was different. The debate became intense, lasted for several weeks and was flavoured with the most hatred personal attacks on those who referred to recent biomedical research and were advocating the view that ME is a somatic disease. It all started when a new group of 71 persons called “Recovery Norway” wrote an article with the message: “we know how to be cured of ME. Listen to our message”. The network consisted of previous patients or relatives, and some health personnel who recommend CBT and LP to cure ME. By mind control ME patients are able to control their disease the Norwegian public was told by this group. Not only ME could be cured by such mental exercise, a number of other diffuse conditions as fatigue, pain and tinnitus should be treated with these alternative methods. Why doesn’t anyone listen to us and why do so many doubt we previously have had ME and are now cured? the group asked rhetorically. Four days later September 22nd I wrote as a response with the title: Listen to the ME patients: “In Aftenposten September 18th there is an interesting article by a group of former ME patients who are now recovered. Why not take advantage of their experience using untraditional and alternative therapies such as LP and CBT? It is unfortunate that the group feel they are disbelieved both regarding their previous ME diagnosis and that they today are cured. We are grateful for every patient who have been healed and obliged to try to learn from their experience and what made their improvement.” I continued: “When we discuss ME it is, however, important to know that ME follows phases. Persons who previously were very active and healthy may quickly deteriorate. I have myself the last 10 years or so visited many of the sickest ME patients in Norway in their homes and probably seen more than most. Many have a condition compatible with encephalitis, and this is exactly what modern research seems to reveal. ME is an inflammatory condition affecting several organs, also the brain. The immune system is activated. Some patients improve spontaneously while others are bedridden through years with great pain. This is where those who claim to have improved from ME may contribute with valuable information. Invest in ME research (Charity Nr. 1153730) www.investinme.org Page 37 of 56 H s n cu si wi b I P

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