It's a good ambition to try to "shift the burden of funding away from the backs of patients" but it's worth us all remembering that even in diseases that get huge amounts of government funding, nearly half of the total research funding still comes from charities, at least in the UK. I read this in this very interesting
paper on research funding by ME Research UK's Dr Neil Abbott. He says that in 2007/8, the MRC's total research budget was 1.3 billion; and in that year, medical research charities spent 791 million, that is, almost half the total research spend.
Dr Abbott says, "Even if the biomedical investigation of ME/CFS got its fair share of Class 1 funding [from the MRC] — something that many of us are still pressing for — that share would fund only a small part of the biomedical activity that is necessary."
So, even though I applaud the CAA for wanting to take some of the funding burden from patients' backs, we're not just it for now, we'll be part of it for ever and the more we donate to research, the faster we'll all get better.
For those many of us who are broke, in the UK there's an ME/CFS fundraising blog called
Just Four Quid that gives you moneysaving tips to help you be able to afford to give; in the US, there's the
ME/CFS Pocket Money Research Fund that asks for just tiny bits of money, as well as the main research charities themselves.
I've been donating what I can afford in little bits all year and it's been adding up. Please don't let us get the idea that a tidal wave of govt and big pharma cash is going to come along and solve all our problems - if that wave is on its way, and I hope it is, it still wont be enough. We have to give as much as we can afford.