Donating and fundraising by people with ME/CFS - discussion thread

[Trish]

It is foolish to make the comparison to these other diseases when the playing field is anything but fair.

I completely agree with that.

 

[butter.]

This doesn't necessarily scale though - if more people did it, the total amount raised might not be much more. Raising money through online messaging is not the same as charities that obtain donations from other means.

What do you mean by 'necessarily'? I mean obviously it will not scale necessarily.

The point is that we are very far from whatever the saturation point will be for what can maximally and safely be achieved through fundraising by patients and their loved ones.

Furthermore, charities most often can't go for bigger fish without smaller scale funding, because someone has to pay for the bigger fish fundraising done by charities. People always seem to forget that.

Large donors usually start as small donors, also large donors usually only donate when there are a lot of small donations (community trust),etc... (That's what the real and actual data says.)

There is a very uneven playing field, but citing the uneven playing field constantly leads to a self-fulfilling prophecy. One way of many to even out the playing field is peer to peer fundraising.

Let me say this again, people underestimate how extremely (!) difficult and expensive it is for a charity to get a 50 bucks donation, let alone by someone not affected or by someone not knowing someone affected. That's not only the case for ME charities. Overhead is usually between 30-50% of revenue.

Peer to peer fundraising is like a 'cheat code'. If you make a gofundme (takes 5 min) and you get 'only' said 50 bucks, that's a HUGE win. 10 bucks would be HUGE, too.

In a very real sense pessimism about 'what difference will my action X make' is our greatest enemy. If you get even one person to donate for ME who otherwise wouldn't have, you've made a big difference. The more patients realize this, the better the outcome will necessarily be. Institutions are crumbling before our eyes. We need to get more active collectively. Nobody will ride in to save us.

Change for us will come from understanding this—or not at all, I believe.

 

[Dolphin]

Regarding relatives:

In the group I have helped run for the last 29 years, quite a number of parents (of children and adults) and to a lesser extent adult siblings have had standing orders to our research fund. Often the patient has also had a standing order and I know in some cases the patients specifically promoted the idea to their relative.

Not sure I recall any (adult) children setting up standing order for research but some have done fundraisers.

Edited to add: the standing orders of relatives are often larger than that of the patient.

 

[Dolphin]

Regarding the argument that it’s a government’s job to pay for the necessary research, it’s one of the reasons people pay taxes:

The figures seem to show a different picture. Governments take lots of taxes off people but only a tiny fraction of that is for medical research.

I have mentioned before on the forum that the budget for the health research body in my country is €46 million. That is clearly not enough to make rapid progress for the thousands of conditions. Most won’t get any funding in a particular year. The government clearly can’t be relied upon to fund the wanted research with a budget like that.

But another way of looking at it is to compare it to the total tax take: a figure that has been mentioned recently here is €110 billion or €110,000 million.

If one rounds the €46 million figure to €50 million as there will be some inflation, that means that 1/2200 of the tax income (€1 per €2200) goes for medical research. People pay lots of taxes but it mainly goes on things like social security payments of various sorts, non-research health expenditure, education, roads and infrastructure, military, housing, policing and the justice system, etc.

The exact fraction varies by country but from what I’ve seen the medical research budget is a very small part of government expenditure (an exception may be the US where there is less of a focus on helping everyone in society with universal health care and other government spending).

It’s not nice to think about: I would much prefer to be able to sit back and think it’s a government’s job to pay for the necessary research. But it doesn’t seem to be based on the figures.

 

[Robert 1973]

Thanks to @Sasha for highlighting my fundraising. Sorry, I’ve not had the capacity to join the discussion until now.

I haven’t managed to read all the comments but here as some thoughts in response to some posts.

People think the condition is treatable so they spend a lot of time and money on treatments. If people invested 1% of what they spent on treatments into research, a lot of money would be raised.

I strongly agree with this. I know people with ME/CFS who have spent fortunes on private unproven treatments. In my experience most people who are diagnosed with ME/CFS (including me) spend a fair amount of money of unproven treatments, supplements etc. That is every individual’s right but I agree with Dolphin that if a small percentage of the expenditure was invested in ME research instead, ME research charities would receive far more in donations than that they do, and that would be more likely to be benefit patients.

I requested donations instead of gifts for my 60th birthday. I was quite pleased to raise a few hundred quid at the time. However I do rather regret the choice of recipient

That was how my fundraising started. I hate waste and I found it depressing when family and friends were wasting money on things I didn’t need, when all I need is my health. I think the fact that I asked people to make donations instead of giving me presents helped to convey message, because I was making sacrifice of sorts.

I 100% agree with you that guilt-tripping is not appropriate. I also don't think it's an effective way of getting people to donate.

I publicise my fundraising to try raise money and to encourage other people to do it if they are willing and able.

I hope I don’t make anyone feel guilty if they are not able to donate, but I do try to make people who know me aware of my struggles – and the struggles that all people with ME/CFS face – in order to encourage them to donate.

I don't think we can make assumptions about what anyone else can do. Lives are complicated. Some can, some can't, and none should be pressured into trying.

I agree that some people can’t, but looking at the numbers @PeterW has provided I think we can infer that many more people could be doing more to fundraise. I wish I had started fundraising sooner.

I have also reached the age where most of my friends and family members of my generation are either dying, seriously ill, or have people close to them suffering from more deadly diseases. How can I ask someone whose husband has died from Parkinsons disease, or whose wife has died of cancer to donate to my condition that doesn't appear to be killing me?

I respect your decision, Trish, and I’m hugely grateful for all the work you do here, which will benefit people with ME/CFS more than many donations.

I have met with a lot of scepticism, hostility and abuse from family friends and medical professionals over the years but I am also aware that I have been luckier than many with regard to the support I have had from some people who know me – particularly the support of my parents who have housed, fed and cared for me for 30+ years.

As it happens, one of the people who has made the most donations to my fundraiser is a relative whose husband suffered with Parkinson’s for 30 before he died a couple of year ago. I’ve also found that friends and family who have been unwell and in some cases died with different illnesses like cancer have become more sympathetic to me after experiencing debilitating illness for themselves. Again, I appreciate that that may not be everyone’s experience.

I don’t usually ask anyone directly – instead I tend to sent circulars emails or put things on Facebook saying I’m asking for donations instead of presents unless anyone wants to give me something in particular.

Over the years I’ve received quite a few donations from people I don’t know after sharing my fundraiser on Twitter – including one donation for £1000 – so one doesn’t necessarily need to know anyone to raise some money.

I’ve also asked people to make donations in return for small bits of work I’ve done for people over the years – eg proofreading and some web design work – and the small trickle of royalties from my book go to MERUK too.

I am aware that I am lucky that I’m am not currently struggling to pay for food, accommodation or heating and I know there are many people who are. One day research will lead to answers to relieve the suffering that so many of us endure, which is why I try to raise as much money as I can for research.

 

[Sasha]

Thanks, @Robert 1973, very interesting to hear your thoughts!

 

[Dolphin]

I’ve also asked people to make donations in return for small bits of work I’ve done for people over the years – eg proofreading and some web design work – and the small trickle of royalties from my book go to MERUK too.

I am aware that I am lucky that I’m am not currently struggling to pay for food, accommodation or heating and I know there are many people who are. One day research will lead to answers to relieve the suffering that so many of us endure, which is why I try to raise as much money as I can for research.

Yes, I have at least once done something similar. Somebody in another country asked for detailed help for their income protection policy fight with an insurance company. They subsequently asked could they give me money but I suggested they donate to their ME/CFS research fund of choice.

I’ve also received some fees for media interviews all of which I have donated to the ME/CFS charity I help run as I did also with a financial prize I got for my advocacy work.