Of course it's good if people donate. I'm doing it myself. But certainly a lot of responsability also lies with people in governments or public institutions. Because even apart from the money, you need personnel and technical assets to do research. Especially in Europe a lot of that is to be found in universities, which are generally public corporations. And unless private donors can also create research institutions (which they can, as in the case of the WPI, but i think this is something that hardly exists in Europe) they will still have to rely on governments or at least people employed by public institutions. So i think we need them either way. But all the additional money helps of course.
What i wanted to say is this. The people affected by a condition are usually the least capable group to donate. They often can't work and if they can, they will probably not be able to make much more than what they need to get by. So they will have to find other, more potent donors, in addition to themselves, to be able to really move things.
And they should be careful. Once again, it's good to donate, but i would not want anyone to be in a situation, where they get into serious troube, because they gave away something that they would have needed for themselves. If you're healthy you can easily handle some problems. If you can't afford to repair your car or pay the fuel or pay a taxi, you can walk, no problem. With us it's different. If you can't pay your electricity bill or your rent and they cut you off from electricity or you lose your apartment or house, a healthy person can handle this, for someone with CFS, it might be life threatening. So even if it's important to donate, i think people have to make sure that they can take care of themselves first and then see what is left to make a donation.
Me myself, i hardly spend any money on doctors or treatment. I've never had any form of treatment because i was not aware of any treatment that might help. And so it also does not make sense to go see a doctor often. I get a check up about once a year to make sure everything is fine and that's about it. If i see a doctor apart from this, it's mostly because i have to so to calm my family or to get a paper for government, university, military etc.
And in our health care system we are forced to pay for insurance, so i have to pay that anyway, no matter if i go see a doctor or not.
But i agree, we as individual persons should take responsability, of course. It's never good to just wait for someone to fix things for you, this will put you in the position of a child or someone unfree.
Thanks for your thoughtful post.
I have a good idea who has donated in my country over the years. Maybe not so much in the last couple of years but more in the past. I don't believe there is a problem with people giving to research money they can't afford.
One can not say the same thing with what people spend on treatments of one sort or another, many very speculative or only likely to give short-term or symptomatic relief.
It should not be forgotten that surveys show nearly everyone in the countries I know do give to charity.
I know in my country, in any one year, over 95%, probably closer to 99% of the people with ME/CFS are not supporting ME/CFS research.
Before we started collecting money, there might have been a handful of the people in the country giving to research (in other countries).
These people are clearly supporting some causes but not ME/CFS research.
People were waiting around, giving out that nothing was being done not recognising that they have the power to make a difference.
While some people may only have basic government disability payments, a reasonable percentage can be on insurance type payments where you get 2/3 (say) of their former salary. And of course, these people dont have some costs associated with working.
But what I want is people realising they can make a difference raising money. Donating themselves in only one way of doing this. There can be ways they can fundraise and/or encourage family members to fundraise or donate.
Some parents, spouses/partners, siblings and others can be willing to support. And if one gets one of these people to give a monthly donation, it can add up to a LOT longer term.
Private money can also lead to releasing some other sorts of money or resources, either at the same time as the study or the study providing pilot data which allows the researchers to apply for bigger grants.
This hasnt worked so well in the UK where there seems to be a bias but certainly in the US, smaller studies have gone on to release more dollars from taxpayer-sources.
One needs also to support existing researchers in a field or they can leave. In Ireland, there arent really researchers interested so its not so easy to access any sorts of government funds (i.e. just re-iterating the point that one needs to keep researchers in the field).
