Journal of IiME Volume 6 Issue 1 (June 2012) infusion, which we must remember consists of a monoclonal antibody – an immunoglobulin. This worsening may last from a few days to some weeks. This reaction may tell us something important and be a clue to pathogenesis. There are no consistent correlations between B-cell numbers and relapses, but this is also the case with Rituximab treatment in RA. Another important thing to understand is why there is a latency period before response, where some patients get a response as early as six weeks, while others get the response only after 6-8 months. 3. What kind of follow-up studies are already underway? We have one open label maintenance study on 28 patients. We promised the patients in the placebo group in the first RCT to be offered treatment if the study turned out positive, which it did, so this is an ethical responsibility. But most importantly, we want more experience and dose-response data before doing a larger RCT. If we get adequate funding, we plan to initiate a multicenter RCT in more than 100 ME/CFS patients. We also have one pilot study on six severely disabled patients, four of them mostly bedridden. And recently the ethical committee in Norway approved a pilot study trying a TNF-alfa inhibitor (Etanercept) on non-responders to Rituximab. And finally we are doing different studies on pathogenesis with a goal of finding biomarkers. In our biobank we have a lot of samples collected at several time points during our Rituximab studies, and we are attempting to unravel the mechanism behind the disease. From what we see in our studies, we feel confident that at least in a subgroup of patients the pathogenesis at some level will involve B-cells. 4. When do you expect to publish more results? We hope to publish a few articles after this summer. We have done a lot of experiments on immune measurements, autoantibodies, gene expression etc. Some of the data are negative findings, but it is important that the negative data also get published to get the total view of what is happening. 5. Are you encouraged so far by what you see in the follow-up studies? Yes, so far we have not discovered anything that undermines our previous findings. However, the disease probably is even more complex than we originally thought. Invest in ME (Charity Nr. 1114035) Jorgen Jelstad’s book – De Bortgjemte – is currently only available in Norwegian. The charity hopes we can further influence the publishers to have the book translated into English as we feel it is currently the best book available to describe the political situation and the scientific situation surrounding ME. ME STORY I started to feel unwell about the age of 11. I started to feel fatigue, headaches aching muscles, felt like I had the flu all the time and my speech went funny. I went to the doctors and ended up in hospital. They didn’t know what to do with me so I went to another hospital. That’s when my nightmare began. I felt really ill at that time and a sister said it was all in my mind. I was left on a hard plastic chair all day. I was struggling to feed myself and my weight went down to 3 and a half stone because of the neglect that I had at that hospital. I was close to death so my family took me out of that hospital. It saved my life. The disgusting treatment that I had at that hospital I could go on. - Shelley www.investinme.org Page 18 of 108

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