The numbers I quoted we are raising in uk was a guesstimate based on what I observe charities reporting that they are funding. It wasn't a negative estimate as to what could be raised , it was An observation of what is being raised with all the efforts out there to date to encourage donation. I do agree more could be done on that front especially by the charities and raising for specific projects has been more successful than just waiting for donations.
I agree that there is apathy/inaction in certain quarters, especially maybe those in the mild category who perhaps just arent aware of the seriousness/longevity of the illness or how others are affected. In the severe category where people are acutely aware they are usually very cash strapped, trying to fundraise just for advocacy etc and trying to survive generally. ofcourse MEA a couple of years had their Christmas appeal on educational materials for GPs instead of research so money is stretched thin.
Regarding is lack of giving is due to expecting the state to provide, maybe some people are very naive, but it's not as if there's been visible effort getting the state to step up diverting attention. I have actually gone without niceties of life and given in desperation because I've been well aware that the research projects won't get off the ground unless patients self finance them. As I said politically some might Feel a distaste at suggestions the state intervene whereas I'm on the left and think it's the states job. It's not that I think government should fund all research, we know MS , CANCER etc raise millions Privately which is great but they should fund some and ,due to the name, stigma, complex narrative I just don't think ME can raise the same type of money that it also deserves to make proper progress. It can't compete in the public sphere. Outside the mild 25% the rest of sufferers won't be in work and are possibly impacting on their families ability to work which must impact fundraising capability.
Re taking ownership, maybe a fresh new initiative could take off in uk if it could outreach and rally but I don't know else what can be done to change things so that next year we are drawing In much more than this, even on forums there is just a very small group who contribute and I assume the many thousands rest are just getting on with it or so, how are they reached outside charities, I don't know and AFME are just diversion. . Hope of big breakthroughs and good Drs at the helm can inspire giving but in uk I don't know that we have the ingredients. both MEA and AFME have paid fundraisers I think but it's not elevating it.