Here are my problems. The ME/CFS community is periodically subject to some rather browbeating exhortations to give to research. Spending money on 'unproven' treatments is not approved, even when it helps people. Pleas of poverty fall on deaf ears, even though poverty is a major problem for sufferers, even those who have managed to raise some money for treatments.
The reasons people may choose not to give money to research are:
1. Poverty. Full stop. A lack of understanding by some of just how poor ME/CFS sufferers might become is a major handicap in community advocacy.
2. Being faced with an ideological demand of irrational altruism. People are exhorted to pay for research that may have little to no positive effect on their health, ever, at the expense of having 'unproven' treatments that may actually help them here and now. But, rationally, people benefitting from unproven treatments will want to understandably continue to use what little money they have on treatment that works now rather than some nebulous idea of 'the science' bringing some miraculous panacea in the future.
3. The various charities funding research want the community's money, but some do not want to be accountable to their funders. This leads to certain charities raining 'friendly fire' on advocacy attempts, colluding in keeping certain things secret from the community, claiming that the concerns of the community are "other people's wars" and refusing to support advocacy initiatives, problems that have occurred in recent years. This inevitably leads people to wonder whether they should be funding charities that may be sabotaging advocacy.
4. Related to this is the realisation that money donated by a sufferer or family may not be used in research that is ethically or scientifically acceptable to them: 'Seedcorn research' where more projects that build upon what is already known is what is needed; futile, cruel 'animal' research that actually sets back progress in real time; collaboration with other people whose names raise alarm bells; researching on unsafe concepts of 'stress' or 'fatigue' or 'neediness'; or failing to use suitable cohorts, as just some examples. These are massive problems facing an increasingly knowledgeable ME/CFS community. It is inevitable some people will not want to fund research of this nature.
5. Piecemeal research funded by small donations may not be taken seriously, or worse still, deemed as pandering to specific interests, by opponents. People may wonder if their funding such research is futile.
There may be other reasons. Indeed, the above applies across the board of research funding for all conditions per se. The exhortations to the community to fund research tend to ignore these legitimate objections, instead implying the community are recalcitrant, miserly idiots who spend their copious money on crazy, useless treatments.
Addressing these problems and treating the community with respect rather than as idiots might actually work better for those who wish to raise funds for research.
This is only a shortish answer. There are all sorts of issues around MRC funding etc. which is why, as you may know, I've been involved a lot in exposing MRC inconsistency on funding for biomedical research over the years, so I have actually been working on a solution, with others, whatever its success or lack of it.
And exposing problems does not mean one must have some magical solution. In this case, there isn't one.
The issue of funding research is far more complex than a simplistic belief that a little bit here and there from all patients will be the solution.