I think it is important that there is private money raised for research to speed up research progress. For example, researchers will have a better chance of getting government grants if they have pilot data which can be paid for from private funds. Also, ideally private funds would step in to fund some larger studies that get turned down for government grants; only a relatively small percentage of applications in most countries on average get granted government-type funding so, ideally, one would like other sources of funding.
In one discussion that I was part of someone suggested that donating should be left to millionaire sufferers and ex-sufferers and mentioned a couple of celebrities. I imagine this view is reasonably common, and indeed the post itself got some likes.
However, I'm not convinced it is the optimal strategy.
Firstly, in the Irish ME/CFS Association, we have raised over €300,000 for research over the years. A lot of this was from standing orders and most of the rest from fundraisers of one sort or another. Most of the donations were generally small with the maximum being a few of €1000. I don't recall any of the €1000 donations being from millionaires and my impression is that none of the people with standing orders are millionaires. If we had left it to millionaires, we would likely have no or virtually no money. Not a good way to the if one wants progress relatively soon. Our overheads are not large, and the research fund is only part of our activities so we could still survive with no research donations, but many other research funds have bigger overheads and a fundraising strategy which raised very little if anything doesn't seem a sustainable long-term strategy.
I'm not sure there are that many millionaires with the illness in most countries in the world (the US is an exception). Also, many of those that are millionaires could have suffered significant financial losses from having the illness. They could be struggling in their own ways to maintain, for example, big mortgages and wouldn't necessarily want to sell their homes. Also, the more money one has, the more treatments one can try including overseas. Just like many other people with the illness, they could try lots and lots of therapies with the hope of getting better and not be focused on supporting research. Also, they may feel they have paid millions or whatever in taxes over the years, and so it should be up to governments to pay for the research [even though in reality outside the US, research budgets are relatively small compared to the total tax take and when one divides it between hundreds of major conditions, thousands of less common but still sometimes fatal conditions as well as basic scientific research that is not specific to a particular condition but is still useful].
Moreover, in my experience, people who recover or see themselves as recovered rarely donate to the cause. They no longer have the self-interest of wanting progress for themselves so, even if they want to support charitable causes, there are hundreds of thousands, if not a million charities they could donate to. They may also think that all people with ME/CFS need to do is whatever they ascribe to their recovery to and so research isn't necessarily needed that much.
Furthermore, how in practice might one target solely millionaires? In many situations, one has no idea about people's financial circumstances. Appeals for funding/"begging letters" which say something like only donate if you are a millionaire are not likely to bring in much money. I don't believe other conditions that are good at raising money restrict themselves to millionaires in their appeals for funding.
Also, I sometimes think there is a focus on money as if it is the only thing people with the illness are short on. People with ME/CFS are by definition impaired in their functioning and how much they can do. Also, they suffer from post-exertional malaise/neuro immune exhaustion which can lead to setbacks and relapses which could be permanent from activities, both mental and physical. One approach would then be that just mildly affected people (who are perhaps akin to millionaires in how much energy they have compared to many other patients) would be involved in ME/CFS activism of various forms. I think most people would notice that that would not be an optimal strategy: people who are moderately and severely affected can give important inputs to activism; similarly, people who are not millionaires can give important financial inputs. Solely relying on financial millionaires or "energy" millionaires doesn't get the maximum output out of the community.
I think in practice the best strategy is to argue why raising money privately is important. If there is sufficient fundraising, hopefully millionaires will be reached. Without fundraising and appeals, many won't be reached, as I imagine is happening in many countries in the world now. As I mentioned previously, ideally one wants research funds in lots of different countries, so people in those countries can avail of the tax benefits of donating to registered charities in their countries [See: "It'd be great if research funds could be set up in more countries, either as part of existing groups, stand-alone or affiliates of other charities"
https://forums.phoenixrising.me/blo...-alone-or-affiliates-of-other-charities.2581/ ].
Anyway, to summarise, I am not convinced that solely focusing on millionaire sufferers and ex-sufferers is practical or the optimal strategy. I know this might not be a popular opinion with some but I just want strategies used with the best hope of progress; I have been ill 30 years and diagnosed and severely affected 25 years and research progress has been too slow for my liking, which I think is a lot down to a lack of private (as well as a lack of public) funding.
In one discussion that I was part of someone suggested that donating should be left to millionaire sufferers and ex-sufferers and mentioned a couple of celebrities. I imagine this view is reasonably common, and indeed the post itself got some likes.
However, I'm not convinced it is the optimal strategy.
Firstly, in the Irish ME/CFS Association, we have raised over €300,000 for research over the years. A lot of this was from standing orders and most of the rest from fundraisers of one sort or another. Most of the donations were generally small with the maximum being a few of €1000. I don't recall any of the €1000 donations being from millionaires and my impression is that none of the people with standing orders are millionaires. If we had left it to millionaires, we would likely have no or virtually no money. Not a good way to the if one wants progress relatively soon. Our overheads are not large, and the research fund is only part of our activities so we could still survive with no research donations, but many other research funds have bigger overheads and a fundraising strategy which raised very little if anything doesn't seem a sustainable long-term strategy.
I'm not sure there are that many millionaires with the illness in most countries in the world (the US is an exception). Also, many of those that are millionaires could have suffered significant financial losses from having the illness. They could be struggling in their own ways to maintain, for example, big mortgages and wouldn't necessarily want to sell their homes. Also, the more money one has, the more treatments one can try including overseas. Just like many other people with the illness, they could try lots and lots of therapies with the hope of getting better and not be focused on supporting research. Also, they may feel they have paid millions or whatever in taxes over the years, and so it should be up to governments to pay for the research [even though in reality outside the US, research budgets are relatively small compared to the total tax take and when one divides it between hundreds of major conditions, thousands of less common but still sometimes fatal conditions as well as basic scientific research that is not specific to a particular condition but is still useful].
Moreover, in my experience, people who recover or see themselves as recovered rarely donate to the cause. They no longer have the self-interest of wanting progress for themselves so, even if they want to support charitable causes, there are hundreds of thousands, if not a million charities they could donate to. They may also think that all people with ME/CFS need to do is whatever they ascribe to their recovery to and so research isn't necessarily needed that much.
Furthermore, how in practice might one target solely millionaires? In many situations, one has no idea about people's financial circumstances. Appeals for funding/"begging letters" which say something like only donate if you are a millionaire are not likely to bring in much money. I don't believe other conditions that are good at raising money restrict themselves to millionaires in their appeals for funding.
Also, I sometimes think there is a focus on money as if it is the only thing people with the illness are short on. People with ME/CFS are by definition impaired in their functioning and how much they can do. Also, they suffer from post-exertional malaise/neuro immune exhaustion which can lead to setbacks and relapses which could be permanent from activities, both mental and physical. One approach would then be that just mildly affected people (who are perhaps akin to millionaires in how much energy they have compared to many other patients) would be involved in ME/CFS activism of various forms. I think most people would notice that that would not be an optimal strategy: people who are moderately and severely affected can give important inputs to activism; similarly, people who are not millionaires can give important financial inputs. Solely relying on financial millionaires or "energy" millionaires doesn't get the maximum output out of the community.
I think in practice the best strategy is to argue why raising money privately is important. If there is sufficient fundraising, hopefully millionaires will be reached. Without fundraising and appeals, many won't be reached, as I imagine is happening in many countries in the world now. As I mentioned previously, ideally one wants research funds in lots of different countries, so people in those countries can avail of the tax benefits of donating to registered charities in their countries [See: "It'd be great if research funds could be set up in more countries, either as part of existing groups, stand-alone or affiliates of other charities"
https://forums.phoenixrising.me/blo...-alone-or-affiliates-of-other-charities.2581/ ].
Anyway, to summarise, I am not convinced that solely focusing on millionaire sufferers and ex-sufferers is practical or the optimal strategy. I know this might not be a popular opinion with some but I just want strategies used with the best hope of progress; I have been ill 30 years and diagnosed and severely affected 25 years and research progress has been too slow for my liking, which I think is a lot down to a lack of private (as well as a lack of public) funding.