Some studies would be more expensive than others to do. Would most be under a million or half a million?
It depends entirely on what is being tested. Could be almost free, to hundreds of thousands of dollars, typically.
I would love it if someone or a group of ME advocates would set up a bank account and have a process where we could register our name to commit to a $10 or more a month for getting some pilot studies done. If 10.000 PwME committed to $10 a month we could raise over a hundred thousand or more a month. I would find up to $40 a month if there were only 2.000 PwME who would also commit to 40 a month. We would need to set up a committee who understood the science and the right research to fund. We could fund quite a few pilot studies in one year. I don't know what others think about this.
I think that’s what both Solve and the MEAssociations respective Ramsay Funds are for. May be simpler to get involved with one of those organisations.
Ok, thanks @NelliePledge I'd be interested to know how much is being donated a month and how many are donating.
I wish it’d be set up like a go fund me campaign so we could choose what research we’d like to support. On this subject: I am interested in which ME organizations other patients are choosing to financially support and what factors led them to choose the organization(s) they did. I would like to donate some money but because I’m severely ill I’ve had difficulty completing research into different organizations. As I noted on another discussion about this issue, I’ve been disappointed in some ME groups in the past and am trying to be cautious as a result. However my caution is leading me not to donate which is not what I want either. I’ve been trying to decide if it’d be better to give several smaller donations to separate organizations or one bigger donation to one organization. Sidenote: I also wonder if there is a master list of all ME organizations anywhere?
I think the Solve ME/CFS Ramsay grants give about 35.000 to 50.000 to a research team per year. See minute 2 of this interview with Andy: https://www.youtube.com/watch?v=TSBi9zHUzvg You can read about the British ME Association grants here (although I don't think their figures are per year): https://www.meassociation.org.uk/20...f-worlds-cruellest-illnesses-23-october-2019/ 100.000 pounds go to the UK ME/CFS Biobank, 70.000 to Karl Mortons group at Oxford and 25.000 to Geraghty's group at Manchester. I suspect this isn't the full cost of their work and that they are funded in other ways such as through universities etc.
Perhaps there is a more up-to-date list now than this: I know that the Open Medicine Foundation have opened up in Canada.