Journal of IiME Volume 6 Issue 1 (June 2012) THE DRUG AND THE POSSIBILITY OF CHANGING EVERYTHING Author: Jørgen Jelstad Jørgen Jelstad is a Norwegian journalist and author of the documentary book “The Hidden Ones: and how ME came to be the most controversial disease of our time” (only available in Norwegian – named “De Bortgjemte”). The book received great reviews from Norwegian critics, some of them citing it as a must-read for health care workers. It has also been referenced on several occasions by some of Norway’s most prominent politicians. Jelstad has a blog: www.debortgjemte.com This article will focus on the recent Rituximab findings in ME/CFS, something Jelstad has followed closely since he started working on the book in 2009. “They soon found that new ideas aren’t always welcome in science – even if the old ones aren’t working.” - Switch off, switch on, The National, 2009. 2004: Patient zero Anne Katrine walks into the Cancer Department at Haukeland University Hospital in Bergen in 2004 to get treatment against the lymphoma the doctors discovered one year earlier. After four rounds of chemotherapy the cancer seemed to be beaten, but suddenly it came back and she is in for her second treatment regimen. Anne Katrine also has ME/CFS since she suddenly fell ill with mononucleosis in 1997. For several years she had mostly been housebound with muscle pain, problems with sleep and great cognitive difficulties. An overwhelming fatigue and malaise has made her unable to leave the house for more than short periods of time. Five weeks after starting the new treatment against lymphoma, something unexpected happens. Suddenly she notices a marked improvement in all the ME/CFS symptoms that she Invest in ME (Charity Nr. 1114035) has endured for more than seven years. She has never before experienced anything like this. Her teenage son had one time told her that he was not sure if he could manage to live with someone as sick as his mother. Now, they were able to go to Turkey together for the holidays. But suddenly it all comes back. The headache, the aching muscles, the cognitive decline and the devastating fatigue and malaise. Back to scratch. “When you had cancer, mom, we had the best dinners ever,” Anne Katrines daughter tells her after the relapse. Sitting in his office at Haukeland University Hospital, cancer specialist Øystein Fluge scratches the back of his head, puzzled. What really happened to his patient Anne Katrine? For years to come he cannot forget what he saw during these months in 2004. 2009: Pioneering In October 2009 I sat in a small office at Haukeland University Hospital in Bergen, a city on the west coast of Norway. I remember it well. The two doctors enthusiastic telling of their surprising tale. I was in the very beginning of researching my book about ME/CFS when I came across a small pilot study from the very same people I was meeting for the first time this day. Even then, without the extensive knowledge about ME/CFS that I have now, I remember thinking: If this turns out to be true, it will change everything. www.investinme.org Page 13 of 108
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