Merged thread
The underfunding of ME/CFS research isn't just by governments; a lack of money has also been raised privately
(I posted this to another thread but it was a bit off topic so I thought I would post it somewhere else instead.)
My original message:
From ME Research UK:
As I have said before, this underfunding isn’t simply from taxpayer money; the amount that has been raised privately has also been relatively small given the numbers affected and how serious the illness is.
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(My response that I have deleted from the original thread)
That may be true, but different illnesses can have other disadvantages.
For example with some conditions a lot of people die relatively quickly while people with ME can be ill for decades giving lots of time for them or family and friends to donate and/or fund-raise money.
I also get the impression some have an overly negative attitude to the potential for raising money from ME/CFS fundraising and think no one or almost no one will donate when that’s not been my experience even with street collections.
I think the biopsychosocial influences has influenced how much is raised privately in another way: all the discussion of it has led many people to believe that the lack of funding in the past is almost solely down to the biopsychosocial influence on grant applications and that the natural order of things is for governments to fund all or nearly all of the necessary research to make speedy progress and that raising private money is not that important. As I explained before, I don't believe that's the case. Research budgets are much much smaller than health budgets and cover hundreds of major conditions and thousands of rarer (but in some cases often fatal) conditions plus often basic research and health services research.
The other big reason I think not enough has been raised privately is so many people think that what they have is already treatable they just need to get the right treatment(s). The attitude then is different from believing one has a currently untreatable illness.
Anyway probably going a bit off-topic [for the original thread] but it does frustrate me how seldom it gets mentioned that the underfunding of ME/CFS research isn’t restricted to governments and similarly lobbying and advocacy isn’t the only way to deal with underfunding. Probably couldn’t post this in some places but Science for ME seems like a place where adult discussions can take place particularly on matters relating to research.
