I recently asked my friend David what he knew about Ampligen. David is someone I have known on and off for 20 years and he has been living with CFS/ME for most of that time. We live in the same city but because he and now me are both to sick we haven’t actually seen each other in about 6 or 7 years. We do email each other daily though and he has been my sounding board and my mentor. I wish he hadn’t ever become ill and I wish he wasn’t still living with this but I suspect that I would be in a total state of madness if it weren’t for his wisdom, experience and guidance ….. anyway …. He and I had a brief email conversation about Ampligen and I hadn’t realized when I had asked about it just what a loaded subject it was. David pointed me in the right direction and left me to do some reading and I finally understood some of what he had expressed to me over the past 6 months about the negative roll of politics, big business and arseholes who just want to make money off of sick people. Things like Ampligen and more recently XMRV come to light and there is a big buzz about them and so we get our hopes up …. But then either no one is interested in funding the appropriate studies, or the facts get mixed with crap and lies and we are deceived or else ‘the latest miracle cure’ turns out to be false ….
I am starting to see the ramifications of so many broken promises and hidden agendas by governments and big industry including medical related ones. It really does suck. I find that as a newby to all of this I am still hunting around for something that will possibly help me get well even though I am beginning to really understand that maybe it’s just best to live each day best I can and if something genuinely helpful becomes available then I will hear about it. I think I haven’t yet let go of all the things I planned on doing over the next decade of my life. I had plans and I keep thinking that if I just manage to get a little better then some of those things are still in reach ….. I’m not sure if it’s better to hang onto that hope or if it’s better to let it go and just be more accepting of reality???
I asked David what he thought about hope verses reality and this was his response:
It’s not a bad thing to hold onto that hope probably. And to continue the search for as long as you can and/or need to.
Even just for some things to help with symptoms. Because heaps of people have had heaps of help with symptoms. Though still mostly it's a matter of finding the best lifestyle to optimise your own life. There's a good chance you'll be in for the long haul and IMHO we've got to get on with the day by day as comfortably as possible... or we just won't make it -- because, let's face it, it IS a killer illness for too too many. Because this is so fucking soul-destroying.
I've got to remember to get a chair for my soapbox... so it doesn't wear me out so much when I climb up on it.
I’d be really interested in hearing other peoples thoughts on all of this??