Hi,
I often think this might be a possibility. I know many people are too ill and of course the vast majority of people are not trained scientists...but some of us should be able to make an impact and the cost of doing our own research would be much much cheaper than the standard routes.
I would like to get people's ideas on this, does anyone agree? For me I think the main problem is one of communication. Even funding is easier than being able to connect enough people together with the right skills (and illness level) in a similar location. How could we go about doing that? If I advertised here for anyone in London with an interest in science who is able to do a little amount of work, would I get enough replies? I am sure there are enough people in London who are capable, but I just don't know how to get in touch with them.
I think funding may not be so difficult as the above. "Canary in a Coalmine" managed to raise funds because it was being carried out by people who suffered the illness for people who suffered. The same would be true in our case.
Something that would require no funding, but would of course require time, would be epidemiology. If we could devise a web-based system, I think we could carry out some very impressive epidemiology which could dwarf the university studies done so far. I also personally think that if it could be shown that there are epidemiological factors at work these could potentially be game changing.
Let's think about doing the studies that no one else has shown any interest in doing for us (for a very long time)!
Let me know your thoughts![Smile :) :)](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
I often think this might be a possibility. I know many people are too ill and of course the vast majority of people are not trained scientists...but some of us should be able to make an impact and the cost of doing our own research would be much much cheaper than the standard routes.
I would like to get people's ideas on this, does anyone agree? For me I think the main problem is one of communication. Even funding is easier than being able to connect enough people together with the right skills (and illness level) in a similar location. How could we go about doing that? If I advertised here for anyone in London with an interest in science who is able to do a little amount of work, would I get enough replies? I am sure there are enough people in London who are capable, but I just don't know how to get in touch with them.
I think funding may not be so difficult as the above. "Canary in a Coalmine" managed to raise funds because it was being carried out by people who suffered the illness for people who suffered. The same would be true in our case.
Something that would require no funding, but would of course require time, would be epidemiology. If we could devise a web-based system, I think we could carry out some very impressive epidemiology which could dwarf the university studies done so far. I also personally think that if it could be shown that there are epidemiological factors at work these could potentially be game changing.
Let's think about doing the studies that no one else has shown any interest in doing for us (for a very long time)!
Let me know your thoughts