Journal of IiME Volume 6 Issue 1 (June 2012) It was a beautiful sunny day, with snow covering the peaks around Bergen. On my way to the meeting with Professor Olav Mella and Doctor Øystein Fluge, I saw signs pointing the public to the mass vaccinations against the swine flu. In a few weeks Norwegian authorities had spent more money on buying vaccines than everything the American government had spent on ME/CFS research for the last 25 years. I remember seeing that as a telling comparison pointing towards a still grim future for ME/CFS. But now, I was wondering if these two doctors story could be a turning point. After 25 years of controversies, lack of funding, maltreatment, ridicule and dashed hopes. Could this be the game changer? Dr Fluge was talking about Anne Katrines remarkable story of recovery from most of her ME/CFS symptoms, and after those months she had never let Fluge off the hook. She begged him to find out what had happened. And in the end, Fluge and Olav Mella, the head of the Cancer Department at the hospital, decides to give it a try even though they have never before worked with ME/CFS, barely heard of it. “Our starting point was: Could this be an autoimmune disease? And if so, could it be that it was methotrexate in Anne Katrines treatment that was working on her ME/CFS symptoms”, said Fluge. Methotrexate is a medication which dampens the immune response. It is used in large doses in some cancer treatments, but it is also used in smaller doses against different autoimmune diseases, for example rheumatoid arthritis. Anne Katrine had gone through three different courses of cancer treatment, but only with one of them did she experience a near resolution of her ME/CFS symptoms. In that treatment she got methotrexate, something she did not get during the other treatments. “We could not know if this hypothesis was right, but our idea was to try to treat CFS with Rituximab, which is a medication that works directly on the B-cells in the immune system,” said Fluge. Like methotrexate, Rituximab is a medication that dampens the immune response, but through a Invest in ME (Charity Nr. 1114035) different mechanism. It basically wipes the B-cells out for a few months before they slowly grow back. Both of these medications are used in the treatment of cancer and autoimmune diseases. In 2007, Fluge and Mella decided to do a small pilot study on three ME/CFS patients. One of the three patients they contacted was Svein. “Before Olav Mella called me, I remember I discussed with my wife how long I would manage to go on with this disease,” said Svein when I asked his story in a phone interview. He worked at the local hospital, but after a serious viral infection ten years earlier he never recovered. For a long time he tried to stay at work, but in the end had to give it up. “I have been so ill that I was bedridden and had to get help to get to the toilet. But of course, I still hope to get back to work some day,” Svein said. Six weeks after his first infusion with Rituximab something happened. In just a few days Svein experienced major improvement in all ME/CFS symptoms. “My father in law has a cabin, and it is situated just a hundred meters from the road from where we had to walk. Usually my stay at that cabin had been just managing to get there, and then I had to lie on the couch or the bed during the whole stay. Now I went skiing with my kids,” said Svein. In their pilot study, published in BMC Neurology in early 2009, Mella and Fluge writes: He could take one-hour walks and started to do carpentry on his house. Myalgic pain was markedly reduced. Cognitive functions improved remarkably, and he could now read a whole book without interruption. The hypersensitivity to noise decreased. He and his wife confirmed that family life had improved considerably. “After my first treatment I finished two books in a weekend. Before treatment I could not even read two pages,” said Svein. But after ten weeks of major improvement Svein crashed. Back to a life within the four walls of his house. All the symptoms came back as fast as they had gone away. He received a second treatment www.investinme.org Page 14 of 108
15 Publizr Home