Here's the situation. It's an experimental drug. Early reports are very promising - it could be a legitimate breakthrough, but the drug also has potentially significant side effects - a dark side. You're give the opportunity to test it out - for free. You trust the doctor providing it but he/she emphasizes that nobody really knows what will happen. It could produce a breakthrough or breakdown or do nothing. What do you do?
First,thanks for all your work getting out info to us all.
I'm an American living near Bergen Norway. I have had M.E. since Nov 2005,but was first diagnosed Dec 2009, just before I suffered a major relapse. (and progressively worse health, so that I am now almost totally house and bedbound). I was lucky enough to be accepted for the Rituximab open lable trial 2010-2014, but had no positive effect.I've been bugging Dr Fluge since, and have been a lab-rat for several preliminary experiments. I am now included in the cyclophosphamid trial (part of the large Ritximab trial going on). It took a bit of thinking before I said yes to the cyclo., as it has a lot more side effects than Rituximab, (some of them potentially harmful), but the drs monitor us verey closely. There is not only no ameliorating treatment here, but the restrictions on importing even vitamins into this country are so stringent, that I see no potential hope of getting better without being accepted for a trial. So I am an exampleof your quote above, and right now enduring part of the "dark side" - side effects that make me even sicker and more debilitated, but hoping for a better future.