Should donating to ME/CFS research be left to millionaire sufferers and ex-sufferers? I'm not convinced

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.

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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.

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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.

Comments

I think that ex sufferers is a waste of time because they usually just move on, sadly, some oblivious to those more severely affected. Philanthropists and celebreties which I mentioned before would be great but in the uk we haven’t inspired any significantly BUT for the latter afaic l we haven’t really tried. We shouldn’t rely on millionaires thus far invisible in uk but if we could find some and suddenly have a few million to invest, over night, not over five-10 years that would be fantastic. You could argue Lyme disease with that billionaire suffererer John somebody who is running a UK LD charity is doing just that.

Whilst I think that that there needs to be more private fundraising and appeals for specific things are generally better but rarely done, I note when MEA did a Xmas appeal the other year they didn’t reach their £100 000 target, yet AFME raked it in quickly at Xmas so AFME has more fundraising potential but unfortunately is less research focused, it seems most interested with a steady income to pay the many salaries. I’m baffled by the members happy to be given occasional helpful, hints on how to shower sitting down etc don’t Also ask that charity to do more for research

Other charities for other illness in U.K., like MS raise 30x more, I stil, don’t understand why there’s such disparity. i notice that ms society has 40-50 000 members ie half of those affected, whilst MEA, AFME, Tyne’s & 25% probably less than 20 000 combined from a double size population, so reach is probably an important factor but here I think the nhs are probably kind of spinning against us. I’m not an mea fan, but Dr Charles Shepherd does often do local media etc so how can mea get more members ? The fee is probably a bit prohibitive, 3x MS, but ME Association struggles to raise the funds to provide basic service. . I feel if we combined Afmes accessibility & marketing with mea science & basic grounding we would have a better bigger more effective combined charity.

I assume you ask the question to get people thinking about the question and also about donating which is good, but I also think that the trouble is the people who read your posts probably are already even going so far as doing without niceties etc to donate and are asked repeatedly from all angles to dig in the same pot and those we need to donate too are unattached and unattainable or possibly as in AFME, not asked. That’s where I do think Celebreties can help raise the profile. I saw that you elsewhere discussed the Australian situation which has been fortunate to have mason financial support but fewer patient donations, I wonder why when they have researchers, have charities etc.

Whilst I do think we are disadvantaged by health authorities misrepresentating the illness to patients in the early years when they still have energy and money, I don’t think theres something different in terms of “unhelpful beliefs” in our community regarding government responsibility etc anymore that I accept the MRC claim that CFS research applications is poorly done, but I too am frustrated generally by the level of research funding STILL, with similar time frame as yourself, we can’t progress at this speed and not go slightly mad with frustration. I do think mea & AFME not joining with #MEAction as a radical patient movement missed the chance to mobilise, inspire & motivate the patients in the U.K. to both get more involved themselves and ask more of others.

Finally there’s a post on mea Facebook recently about a young women who over came ME to have a glittering career as a matrketkng consultant. Perhaps if we really want an upgrade in fundraising at a patient and private donation level our organisations should be paying or seeking free consultancy from people with expertise in PR & marketing and fundraising on a completely different level to what we are currently doing. Sonya chowdhurys wage would be better spent on something like this afaic. Again I had thought #meaction would have been more successful here because it was based on people power and drawing on the significant skills of people within the community. Social media could probably be more transformative but then OMF are trying everything..... I still am bewildered by why on Facebook a thread headed who else is having a shitty ME day will get 200 comments about how awful ME is and then when a thread is how can we fundraise more or whatever, there’s about 3. (I’m often bewildered :))

I think that its goung to be years before our community attracts unaffected donations unsolicited, like some illnesses might, but how to get more from our community and the state is worth exploring. Perhaps reach is the first thing to work on , so in Uk and other countries how do we reach those who don’t join charities or engage on media? Do we assume they are not severe , the problem is will they care enough then to get involved?
 
Lots of good questions, Cinders66. I don’t have all the answers. I am frustrated by the MRC funding so few biomedical studies in the UK. Unlike in many countries, there have been dozens of applications over the years. I hope more can be unlocked there.

I am not an expert fundraiser or charity professional; I certainly don’t have all the answers. It’d be great if more could be raised privately in the UK. But I think the potential that things could change is greater in other countries. As I have said before, there are quite a number of ground-level fundraising appeals (to the public) for research by families in the UK. In most other countries, such appeals seem to be very rare. So if other countries could get to the stage of the UK, I would be delighted. One can always want more but I don’t think it is unrealistic to hope that more could be raised privately in most countries (outside the UK, US, Norway and maybe Sweden where things are going more in the right direction).

It would certainly be great to get millionaires donating too.
 

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