Can we give it a rest for now? I don’t want to moderate or censor, so I’ve let the mold war go on, but it was a little like being kidnapped, since the rest of the discussion died. I felt unheard; it’s annoying to be told again and again that your observations of your own triggers are incorrect. As I believe I made clear, I support the mold warriors theory in part, just not to the extent they would like, but that makes me a dissenter. On the other hand, I got mail blaming me for giving them a forum. And mail holding me responsible for other peoples comments! Maybe I’m dreaming, but I’d like to think it’s possible for us to come together and further the discussion without overwhelming it. I did ask them back channel to have their say and let it go for now. It will come up again, no doubt. It seems a good time to ask everybody, please, could we try to show a little sensitivity to the rest of the group? We are a sensitive bunch.
There is lots of disagreement. Contradictory ideas abound. Rumor has it that when I started AZT, a well know CFS doctor predicted it would kill me:). We’ve lived in the dark for a long time, but it should be different now. We have a framework from which to further the discussion. We are in a place to finally figure it out. Mold fits as a trigger. Anything that turns on an inflammatory cascade favors the virus, maybe even “ick”.
I appreciate Dr. Enlander’s considered comment. I like you too Derek, and I appreciate that the financial realities of studying Ampligen are not of your choosing. Personally, it would take a lot to get me to undertake long term intravenous treatment again, without a very good statistical chance of success, and I just don’t see it here. The data presented looks like 16 of 100 people will do better than placebo. Presumably a few of them will do really well, but a few will do worse. Not very good odds. Maybe a little better if you’re XMRV positive. I haven’t seen anything about adverse events. People are writing to me that they are desperate to access it, despite its being financially out of reach. It involves paying out of pocket for the drug, the doctor and, in many cases, relocating for a long period of time, enduring two infusions per week, and the effects are temporary. I think I’ll wait this round out, thanks.
I am feeling a little worn out by all the contentiousness. We need to lift each other up, not bring each other down. There must be a way of sharing without clobbering one another. Our goals are aligned, even if we are not all on the same page at a given moment. We all have enough troubles without fighting amongst ourselves.